Research paper

The quality of patient

Authors
Suzanne Parsons
engagement and
Anna Winterbottom
Peter Cross
involvement in primary care
Don Redding

An Inquiry into the Quality of General Practice in England

The quality of patient
engagement and
involvement in primary
care
Suzanne Parsons, research associate, Imperial
College School of Medicine, and previously a
researcher at Picker Institute Europe
Anna Winterbottom, previously a freelance health
researcher, now with Bradford University
Peter Cross, quality improvement manager, Picker
Institute Europe
Don Redding, independent policy and
communications consultant at Don Redding
Consultancy Limited, and a policy adviser to Picker
Institute Europe

This paper was commissioned by The King’s Fund to inform

the Inquiry panel.

The views expressed are those of the authors and not of

the panel.
 Acknowledgements

The research team would like to thank all of those who agreed to be
interviewed as part of this study. We would also like to thank The King’s Fund
for commissioning this work, our peer reviewers, and our other colleagues
involved in the inquiry into the quality of general practice in England
commissioned by The King’s Fund.

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 Contents

Executive summary 4

Introduction 7
Why patient engagement and involvement matters 8
Picker Institute Europe: background 10
Research design 11

1 Patient engagement in general practice consultations 12

Research objectives and methods 12
GP and patient perceptions of key domains 12
Measuring patient engagement 17
Suggested indicators 20
Recent, current and future measurement 28
Conclusions 33

2 Patient involvement in development of services 35

Background 35
Rapid review of involvement initiatives 38
Three examples of notable practice 44
Conclusions 57

3 Discussion: the challenges of engagement and involvement in

primary care 59
The challenges of engaging patients in their care 59
The challenges of measuring patient engagement 62
The challenges of involving patients in service development 63

4 Discussion and suggestions 65

Patient engagement 65
Patient involvement 66

Appendix 1: The review of qualitative studies of engagement 68

Appendix 2: The review of existing measures of engagement 76

References 96

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Executive summary

Picker Institute Europe reviewed the quality of patient engagement in

primary care, how to measure it, and developments in patient involvement in
primary care.
For the purposes of this report we have used the following definitions.
■■ Patient engagement means engagement in one’s own health, care and
treatment.

For our review of patient engagement literature, we have focused primarily

on the consultation between the general practitioner (GP) and the patient, as
this is the most developed aspect of primary care. For this reason we did not
focus on engagement in other primary care practitioner–patient relationships
■■ Patient involvement means involvement in the design, planning and
delivery of health services.

Patient engagement
We reviewed studies of patient and GP perceptions of the factors that
enable patient engagement, and found that patients and GPs consistently
identified very similar themes. From these themes, the following ‘domains’
of engagement in primary care consultations (that are acceptable to patients
and GPs alike) could be identified:
■■ agreement and understanding of patient and GP responsibilities

■■ assessing and expressing needs and wants regarding engagement

■■ confidence in engagement

■■ consultation length

■■ understanding of the impact of contextual factors on the consultation

(time, resources and so on)

■■ training and support for engagement

■■ informational support

■■ respect

■■ continuity of care.

We searched the available tools and measures used to assess and monitor
patient engagement in general practice consultations. It found many
instruments, and classified the common domains of measurement as:
■■ listening

■■ involvement in decisions

■■ information, explanation, questions being answered

■■ consultation length

■■ empathy.

On the basis of these two reviews, we are able to propose:

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■■ a set of indicators for measuring the quality of patient experience

within these domains

■■ a list of potential questions capable of monitoring these indicators

■■ existing sources from which to draw those questions.

Measurement of the quality of patient engagement in primary care in

England has not been consistently useful. National surveys for successive
regulators from 2002 to 2008 did not provide results at individual practice
level, and were therefore not useful for quality improvement. The subsequent
General Practice Patient Survey does provide practice-level results, but with
questions that could be considered of limited value in terms of the breadth of
data that they are able to provide.
Results from the most recent national surveys show that patients report high
levels of patient confidence and trust in GPs, and good (probably improving)
experience of doctors’ communication skills. However, there are significant
numbers of patients reporting that they had not been as involved in decisions
as they wanted to be.
There is a good availability of measures and indicators for patients’
experience of engagement in the consultation, but there are also various
issues for consideration by the Inquiry in relation to choosing which
measures to recommend.
These include:
■■ the nature of current and future data collection

■■ the purpose of measurement and the level at which it is required

(individual practitioner, primary care practice, specific practice or
comparison across practices)

■■ preference for research methods (‘satisfaction’ versus ‘experience’).

The challenges facing primary care practitioners in improving the quality of

patient engagement include:
■■ training needs – particularly to gain the skills to go beyond
basic communications skills; to elicit patients’ views, values and
preferences; and to assess patients’ capacity and willingness to share
in decisions

■■ changing the culture of specific general practices or health centres to

focus on engaging patients

■■ the associated need for an active care-planning approach – especially

for people with long-term or recurring conditions

■■ the length of consultations

■■ the loss of ‘ownership’ of the patients’ treatment options, through

referral to secondary care.

Patient involvement
There are few reliable and robust studies of patient involvement in
developing primary care services. In the absence of a solid evidence base,
we reviewed recent reports and investigated some of the most interesting
current initiatives.

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These indicated the following.

■■ World Class Commissioning and other central guidance on patient and
public involvement are not specific to general practice level, and have
had little impact.

■■ LINks are, in the main, struggling to have any impact on patient

involvement in general practice.

■■ Established involvement techniques used at general practice level have

often sought patients’ feedback on one-off issues, rather than their
influential involvement.

■■ The most widespread initiative to promote involvement appears to be

the development and support of patient participation groups (PPGs),
which are reported to exist in around 40 per cent of practices. There is
an ongoing campaign to establish more.

■■ Practices tend to support PPGs as long as the role of ‘friend’ does not
become too critical. The majority of PPGs seem to be in a subservient
role to the practice, providing additional value to the primary care
service.

■■ If patient involvement in general practice is to be scaled up, the most

likely route is through practice-based commissioning (PBC) consortia.

■■ The Department of Health could be encouraged to issue more specific

PBC guidance relating to the involvement of patients and the public.

■■ PCTs, working within the World Class Commissioning Framework,

should be requiring PPI to be demonstrated as part of the business-
case criteria for approval of PBC projects.

This report describes three examples of innovative practice. These show

that at PBC consortium level it becomes possible to initiate and sustain some
more ambitious mechanisms to involve patients in the governance of primary
care services and the development of proposals for service change. Some
common characteristics in our examples appeared to include:
■■ a local history of previous commitment to, and development of,
effective PPI

■■ the use of ‘networked’ patient groups as a ground-level source

of participants and consultees – sometimes drawing on PPGs and
sometimes establishing new patient networks, using other available
channels.

■■ a willingness of the primary care trust to enable these developments,

and to support the growth of PPGs or other local health networks.

Sustaining this type of scaled-up patient involvement requires resources

and support – including communications and administrative support – from
various local stakeholders, as well as from the GP practices themselves.

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Introduction

This report represents the findings of a study exploring patients’ engagement

in their general practice consultations, and their involvement in the
development of general practice services. The study has been undertaken
as part of the Inquiry into the quality of general practice in England
commissioned by The King’s Fund, which has aimed to examine and collect
evidence on the quality of care and services provided by general practices in
England (King’s Fund 2009).
The use of the terms ‘patient engagement’ and ‘patient involvement’, and
their application both to individual care and to the planning and design of
services can potentially be confusing. For the purposes of this report only,
and to aid clarity for the reader, we use these terms as follows.
■■ Patient engagement is used to describe patients’ engagement
in primary care consultations regarding their own health, care
and treatment. We have focused primarily on engagement in the
consultation between the patient and the general practitioner (GP),
as this is the most developed aspect of primary care. We are not able
to provide the same level of focus on engagement in other primary
care practitioner–patient relationships. This is because the GP–patient
consultation is a universal aspect of primary care in terms of the
patient’s experience, whereas patients’ experience of consulting other
types of practitioner is likely to vary from patch to patch.

■■ Patient involvement is used in discussions about whether, and how,

patients (both as individuals and groups) are involved in the design,
planning and delivery of primary care services at the GP-practice or
health-centre level.

We explored the measurement of patients’ engagement in the general

practice consultation by:
■■ reviewing qualitative studies exploring primarily GP perceptions of
the key elements of facilitating patients’ engagement in the general
practice consultation, and patients’ perceptions of how their GPs could
facilitate their engagement. Where they existed, we also identified and
appraised studies exploring the relationships between other primary
care professionals and their patients

■■ reviewing existing measures of patient engagement exploring

how high-quality general practice care (in relation to patient
engagement in the general practice consultation) has been measured
in the past. To do this we reviewed existing questionnaires, scales
and assessment tools used to assess patient engagement within
the general practice consultation. Here, too, we focused primarily
on the GP–patient consultation. Surveys such as the GPPS and the
regulators’ surveys do include questions about ‘seeing another health
professional’, but the variability of this provision militates against
comparative assessments.

We compared and contrasted data from both these reviews, to identify

domains and indicators of quality of patient engagement that appeared to be
important to measure.

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Due to the funding available for this project, and its scope, we did not
have the capacity and funding to search for the quantitative studies in this
area and extract data from those, so we chose to focus our resources on
identifying and extracting data from the qualitative literature. This was partly
because part of the project aim was to identify concepts that had not been
explored in previous quantitative studies, rather than undertaking a meta-
analysis of the quantitative data available.
We explored patients’ involvement in the development of general practice
services by:
■■ exploring the national drivers of patient involvement in the
development of general practice services, and the most likely
mechanisms for achieving this involvement

■■ searching out and describing practical examples of best practice where

these existed.

Why patient engagement and involvement matters

The inquiry into the quality of general practice in England commissioned by
The King’s Fund aims to examine and collect evidence on the quality of care
and services provided by general practices in England (King’s Fund 2009).
There is a proven association1 (Coulter and Ellins 2006) between the
engagement of patients in their health, care and treatment and the outcomes
in relation to:
■■ patients’ recall of information, knowledge and confidence to manage
their conditions

■■ the likelihood of patients reporting that the chosen treatment path was
appropriate for them

■■ patient reports of their experiences, and of their satisfaction with care

■■ the use of health care resources, where engaged patients are more
likely to adhere to chosen courses of treatment, and to participate in
monitoring and prevention – for example, by attending screening.

It has also been shown that some interventions to involve patients in

sharing the decision over treatment choice result in patients choosing less
interventionist (and costly) treatments than their clinicians might otherwise
have recommended.
The degree of patient engagement in consultations can be measured
through patient experience reports. Patient experience, in turn, is part of
the heightened focus on quality stemming from the NHS Next Stage Review
(Department of Health 2008c).
Patient engagement is also a strong feature of the professional standards for
doctors, enshrined in Good Medical Practice (GMP),(General Medical Council
2006) which gives doctors a duty to work in partnership with their patients.
General Medical Council guidance issued since the last revision of GMP
(2006) has further developed and refined the ‘partnership’ duty. For

1 See also the recently published Invest in Engagement web tool, at: www.
investinengagement.info

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example, the 2008 guidance on achieving patients’ consent emphasises

that this should be done in the context of shared decision-making. The 2009
specification of learning outcomes for medical undergraduates (Tomorrow’s
Doctors, GMC 2009) includes new requirements to demonstrate the ability
to elicit patients’ preferences, and to assess their capacity and willingness to
share decisions about their care and treatment.
Training for GPs covers these domains of partnership. For example, the
RCGP’s consultation observation tool (RCGP 2010b) assesses the skills of
students to, among other things:
■■ encourage the patient’s contribution at appropriate points in the
consultation

■■ respond to signals (cues) that lead to a deeper understanding of the

problem

■■ explore the patient’s health understanding

■■ explain the problem or diagnosis in appropriate language

■■ specifically seek to confirm the patient’s understanding of the diagnosis

as well as to ascertain whether ‘the patient is given the opportunity to
be involved in significant management decisions.’

All registered doctors will soon be required to be periodically revalidated

and relicensed against the GMP standards. This system will require the use
of multi-source feedback for appraisal, which must include an element of
patient feedback.
Patients can most legitimately give feedback on the quality of consultation in
relation to the skills of the doctor in informing and communicating with them,
and in enabling them to be active and to share decisions about their care and
treatment (Chisholm et al 2006).
With regard to patient involvement – the active participation of citizens,
users and carers and their representatives in the development of health
services – this is part of the patient and public engagement agenda of the
Department of Health and the NHS, and includes, for example:
■■ a world class commissioning requirement for primary care trusts to
‘proactively seek and build continuous and meaningful engagement
with the public and patients, to shape services and improve health’
(Department of Health 2008)

■■ a legal duty on NHS organisations to consult patients and the public on

significant matters that affect the nature of the services they receive

■■ membership schemes for foundation trust status

■■ local involvement networks (LINks)

■■ rights stated in the NHS Constitution in England for patients to be

informed about their condition and about all available treatment
options, and to participate in discussions and decisions about their
care and treatment.2

2 In Scotland, the Scottish government has placed before Parliament the Patient
Rights (Scotland) Bill which would legally enshrine patients’ rights to receive
healthcare that is patient focused, recognises the importance of “providing optimum
benefit to the patient’s health and wellbeing”, encourages the patient to participate

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Little of this guidance relates specifically either to the provision of

general practice services, or to commissioning by GPs (practice-based
commissioning).
However, two current initiatives are in progress that may more closely affect
the way that general practices involve their patients in decisions about
changes to services. These are:
■■ new regulations for all providers of health and social care under the
Health and Social Care Act 2008, which specify that all providers must
monitor and take account of the views of their service users and their
carers and families

■■ the accreditation scheme that has been piloted by the Royal College of
GPs, and which encourages the involvement of the patient population
in the running of the service.

These initiatives may be linked, since the regulations will be operated and
enforced by the Care Quality Commission, which is talking with the RCGP
about using the assessment criteria drawn from the accreditation scheme.

Picker Institute Europe: background

In undertaking this work, Picker Institute Europe has drawn on its extensive
database of published research literature and previous reviews that it has
carried out for the Health Foundation (Coulter and Ellins 2006) and WHO
Europe’s Health Evidence Network (Coulter et al 2008), among others.
We have also built on our knowledge and understanding of how to measure
the patient experience elements of primary care quality. Picker Institute
Europe carried out the first national survey of patient experience in primary
care in England in 1998. Subsequently it developed and coordinated repeat
national surveys between 2002 and 2008 (Picker Institute Europe 2009) –
mainly for the successive health care regulators – plus, in 2006, one for the
Department of Health.
Picker Institute Europe also has a longstanding interest in researching and
promoting better engagement of patients in their own care and treatment.
In addition to various reviews and published papers, it carried out a three-
year research programme on patient-centred medical professionalism,
which included investigating patients’ and doctors’ perceptions of patient
engagement and examined the instruments available to measure patient
engagement in medical consultations (Chisholm et al 2006).
With regard to patient and public involvement generally, Picker Institute
Europe is a member of various relevant networks, including the NHS
Alliance Steering Group on PPI. It works with primary care trusts to research
patient and public needs, views and experiences, and to assist in forming
PPI strategies. It has carried out two surveys of PCTs to research their
approaches to PPI. It has previously given evidence to the Health Select

as fully as possible, and provides the information and support necessary to enable
patients to participate. As with the NHS Constitution, patients are expected to pursue
the achievement of these rights through complaints and feedback, and there is no
legal enforcement. Also as with the NHS Constitution, the consequent actions to
enable these patient rights are seen as lying with NHS organisations (Boards) rather
than specifically with GP practices. See http:––www.scottish.parliament.uk–s3–bills–
42-PatientRights–index.htm

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Committee inquiry into PPI (2007) and to the Local Government Association’s
commission on the accountability of local health services (2008).
Picker Institute Europe was a member of the primary and community care
advisory group for the NHS Next Stage Review.
From our previous reviews and other work in this area, we can comment on
the strength of the evidence base in the areas of patients’ engagement in
their health care consultation and patients’ involvement in developing health
services.
At the present time, the evidence base is stronger in the area of patients’
engagement in their health care consultations, and weak with regard to
patients’ involvement in developing health services. For this reason, we
have concentrated mainly on patients’ engagement in the general practice
consultation in this work, although we have done some work exploring
patients’ involvement in the development of general practice.

Research design
This study focused on two aspects of patients’ involvement in their
health care. The first is patients’ engagement within the general practice
consultation (primarily with their GP), and the second is patients’
involvement in the development of health services within general practice.
The study consisted of:
■■ a review of existing qualitative literature in the area of patient
engagement within the general practice consultation, primarily with
their GP

■■ a review of existing measures and tools that have explored patients’

engagement within the general practice consultation

■■ identification of existing initiatives that have focused on facilitating

patients’ involvement in the development of general practice

■■ three examples of good practice of involving patients in developing

health services within general practice.

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1 Patient engagement in general practice

consultations

This section outlines the aims of this element of the study and the
approaches used. Within this element of the study we focused primarily on
the GP–patient consultation as the most developed aspect of primary care.

Research objectives and methods

The research objectives were as follows:
■■ to explore the role and rationale for patient engagement in general
practice

■■ to review published qualitative research exploring:

− GPs’ perceptions of the key elements of facilitating patients’

engagement in the general practice consultation
− patients’ perceptions of their GP’s approach to facilitating their
engagement in the general practice consultation
■■ to explore and review how high-quality care in relation to patient
engagement within the general practice consultation has been
measured in the past

■■ to identify key domains within which it may be important to measure

patients’ engagement in the general practice consultations.

In terms of methods, we carried out an electronic search of several research

literature databases (including PsychInfo, PubMed, ASSIA, EMBASE, CINHAL,
the reference lists of all articles included in the review, and prior reviews of
similar literature) to identify qualitative studies that explored patients’ and
GPs’ perceptions of the key elements of engaging patients within the general
practice consultation. We identified the domains that patients and GPs alike
considered important in engaging patients in their care.
We then searched question banks, research literature databases (PubMed,
Psychinfo, Science Citation Index and Social Science Citation Index) and
Picker Institute Europe research-literature databases to identify existing
indicators and measures of patient engagement within the general practice
consultation. We identified the key domains of engagement that these tools
were measuring.
We then compared the key domains that were considered important (by
patients and GPs alike) within the qualitative data to the domains identified
within our analysis of existing measures of patient engagement within the
general practice consultation.
For a more detailed explanation of the study methods, see the appendices to
this report.

GP and patient perceptions of key domains

We identified eight papers that focused specifically on patient and GP views
of factors that might contribute to patient engagement in primary care.

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Study characteristics

Five studies were conducted in the United Kingdom, one in the United States
and two in 11 different European countries. Three studies were conducted
with studies containing only patients and three with only GPs. Some studies
referred to specific populations – for example, patients with chronic illness
(Blakeman et al 2006; Campbell et al 2007), shared decision-making
(Edwards et al 2001), mental health (Lester et al 2006) and older adults
(Bastiaens et al 2007). Three studies that explored GPs’ views on patient
engagement did not focus on a specific population.
Five studies employed semi-structured qualitative interviews, and three ran
focus groups to explore participants’ views. All used thematic analysis to
develop and apply a coding frame to each transcript and elicit themes from
the data. One study was theory driven, and used Howie’s theoretical model
for understanding general practice consultations to structure the findings
(Blakeman et al 2006).

Facilitating factors

We found consistently similar themes across all the studies identified.

Factors that could facilitate greater engagement within the general practice
consultation were classified into the following areas:
■■ doctor-patient relationship

■■ doctor-related factors

■■ patient-related factors

■■ contextual factors.

Participants consistently referred to these categories as being either

beneficial or detrimental to patient engagement, although study findings
were mixed in their appraisal of them. Some studies (Bastiaens et al 2007;
Talen et al 2008) noted positive and negative aspects of these categories. In
other cases, a factor that was considered to be facilitative in one study was
cited as a barrier to engagement in another.
Although the main focus of the review was to identify and describe factors
that contributed to patient engagement, it may be equally beneficial to
identify those factors perceived as barriers to patient engagement, in order
to improve patient-centred care in the general practice consultation.

Doctor–patient relationship

All studies highlighted that establishing a good doctor–patient relationship

was necessary for fostering patient engagement in the consultation
(Bastiaens et al 2007; Blakeman et al 2006; Campbell et al 2007; Edwards
et al 2001; Ford et al 2003; Lester et al 2006; Talen et al 2008; Wetzels et al
2004).
They referred to this in various ways, depending on the study context. For
example, patients with mental illness referred to the need for GPs to value
their lived experience of having a mental illness, and the importance of
sharing decision-making through the exploration (Lester et al 2006).

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In the context of shared decision-making, establishing a good doctor–patient

relationship was described as requiring:
■■ a number of consultations with the same health professional

■■ mutual respect

■■ variable engagement in decision-making, depending on the context.

Other papers noted the importance of continuity in care to develop trust and
to provide encouragement, reinforcement and advice (Blakeman et al 2006;
Ford et al 2003).
What is more, the doctor and patient were identified as needing to work
together in terms of acknowledging a time limit to the consultation and
understanding that there is a partnership between the two parties. This was
seen to foster respect, trust, tolerance and honesty, and to maintain privacy
and confidentiality (Campbell et al 2007; Ford et al 2003; Talen et al 2008).
Older adults defined a ‘good’ relationship as one that was trusting, where
the GP knew the patient and tailored their approach to the patient’s needs
(Bastiaens et al 2007). These last two papers (Talen et al 2008 and Bastiaens
et al 2007) cited the opposite approach as examples of these qualities as
barriers to patient engagement.

Patient-related factors

Patient-related factors included possible complications that patients might

bring to the consultation, such as:
■■ cognitive impairments, such as those perceived by GPs regarding their
patients with mental health issues (Lester et al 2006)

■■ physical impediments, such as deafness in older adults (Bastiaens et al

2007)

■■ holding a negative attitude – in other words, patients not taking

responsibility for their own health (Talen et al 2008)

■■ not accepting authority (Wetzels et al 2004)

■■ the perception that those with mental illness would be bad at time-
keeping, of poor intellect and possibly violent (Lester et al 2006).

A positive way in which patients were perceived to be able to contribute

to their care was in being informed and prepared (Wetzels et al 2004).
This theme was particularly emphasised by Talen et al (2008), where they
identified that patients could improve patient-centred consultations by:
■■ having knowledge of their health history, family health, medication and
diagnosis

■■ arriving on time

■■ describing their illness accurately

■■ bringing a significant other to the consultation, if appropriate.

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GP-related factors

GP-related factors referred to the GP’s ability to encourage the consultation

to be patient centred (Campbell et al 2007; Lester et al 2006; Edwards et al
2001; Wetzels et al 2004). Many qualities were described, including:
■■ being relaxed, confident, and empathetic

■■ encouraging shared decision-making

■■ providing information

■■ taking time

■■ empowering the patient.

Communication skills were also frequently mentioned. These were described

as involving listening, negotiation, recognising verbal and non-verbal cues,
reflective and open questioning, and using eye contact (Ford et al 2003).
In some studies, GPs acknowledged their own lack of communication skills
(Bastiaens et al 2007; Blakeman et al 2006; Wetzels et al 2004).
Other difficulties were identified insufficient numbers of GPs being available,
low accessibility to the GP practice and GPs being too busy (Bastiaens et al
2007).

Contextual factors

Contextual factors were frequently identified as barriers to patient

engagement, including lack of time in the consultation and lack of resources
such as money and personnel (Wetzels et al 2004; Blakeman et al 2006;
Talen et al 2008).
Providing a setting conducive to divulging confidential information was also
identified as being of importance (Ford et al 2003).
Conversely, these factors were identified in one paper as being potential
facilitators to patient engagement if they were increased – in other words, if
there were more time and resources available (Bastiaens et al 2007).

Summary of main points

■■ Patients and GPs consistently identified overlapping themes in each

of the studies, regardless of the health context or location of the
research. These are summarised in Table 1.

■■ Participants felt that patient engagement is multi-factorial, requiring

both practitioner and patient to work together to build a relationship.

■■ Patients and GPs need to develop specific competencies or have certain

personal qualities to facilitate involvement.

■■ Certain barriers were identified at a practical level that could inhibit

patient engagement, such as a lack of time.

The studies identified positive and negative aspects of the factors within
these categories.
These findings are similar to those published in a previous review, which
analysed quantitative and qualitative studies relating to patient priorities

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in primary care (Wensing et al 1998). For example, that review cited 19

studies asking participants to place in rank order of importance a number of
aspects of health care. The five most important qualities were ‘humaneness’,
‘competency’, ‘patients’ involvement in decisions’, ‘time for care’ and
‘accessibility’ – all of which are also identified in the present review.

Discussion

Although increasing patients’ engagement within the general practice

consultation is considered to be a good thing, several challenges may exist.
■■ GPs and their patients may have very specific ideas about their roles
within the consultation, and may be concerned about compromising
their relationships if these roles change (either through patients
seeking to become more involved or through GPs trying to increase
patients’ level of engagement within the consultation).

■■ Patients and GPs alike may lack confidence in increasing the level
of patient engagement within the consultation. Patients may lack
confidence regardless of the GP’s best efforts to encourage them to
become more engaged. GPs may lack confidence in their skills and
experience in facilitating patients’ engagement within the consultation.

■■ Patients may feel that they do not have enough information and
support to enable them to become as involved within the consultation
to as they would like.

■■ GPs may feel that engaging patients in the consultation is appropriate

and valuable but that they do not have the time, information or
resources available to engage patients to the desired level, or that
they cannot prioritise this, given the other demands on their time.

■■ The implicit power dimension within the consultation may also make it
difficult for some patients to become engaged within the consultation.
Some feel unable to express themselves fully as long as the GP is ‘the
expert’ within the situation.

These issues will need to be taken into account when considering how best
to measure patients’ engagement within the consultation. For example, for
some patients, full engagement in decision-making may be neither desirable
nor possible, and any measures of the quality of the consultation would need
to take this into account.

Methodological considerations

Patient engagement in care is a widely researched topic. So, finding only

eight relevant papers was somewhat unexpected. There were several factors
that may have contributed to this.
First, while there are a plethora of papers available on patient engagement
in health care, few studies have focused on a primary care setting. Also,
research conducted in this area has often focused on patient engagement
in specific contexts, such as shared decision-making, older adults, mental
health or chronic illness. This means there have been few seminal studies
that have been cross-referenced, and researchers have not sought to modify
and or replicate findings from other studies.

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Table 1: domains of patient engagement

Domain GPs Patients

Agreement and understanding of patient Clear ideas and agreement about GP Clear ideas and agreement about GP
and GP responsibilities and patient responsibilities within the and patient responsibilities within the
consultation consultation
Assessing and expressing needs and wants Ability to assess patients’ needs and wants Ability and confidence to express their
regarding engagement around engagement, and to act accordingly needs and wants regarding engagement
Confidence in engagement Confidence to engage patients Confidence to become engaged
Consultation length Time available within the consultation to Time available within the consultation to
facilitate engagement facilitate engagement
Understanding of the impact of contextual Recognition of the factors likely to Recognition of the other factors likely
factors on the consultation influence patients’ engagement within the to influence engagement within the
consultation, such as incentives and clinical consultation, such as incentives and
factors clinical factors
Training and support for engaging Need for training to help GPs engage patients Support for those who may experience
who may be difficult to engage, perhaps difficulties in becoming engaged
due to communication difficulties or mental
health problems
Informational support Access to information in the appropriate Access to information in the appropriate
format to inform decisions format to inform decisions
Respect Recognition and respect for one another’s Recognition and respect for another’s
skills and experience skills and experience
Continuity of care Continuity of care Continuity of care

Source: King’s Fund (2010)

Additionally, although some patients’ conditions are monitored through

contact with the GP, many patients visit GPs on a small number of occasions
over a protracted period of time, for minor acute conditions. This may have
diverted research attention to secondary care, where patients are seen more
consistently.
The frequency with which patient engagement has been researched also
made it difficult to develop a search strategy that was sensitive yet specific.
As with all reviews that retrieve a large number of relevant articles, it may be
that certain relevant articles were excluded. However, we did take measures
to minimise the chances of this occurring, such as searching the reference
lists of all articles selected for inclusion and those of systematic reviews
previously undertaken.
Although we retrieved only a small number of relevant articles, we gathered
data from more than 12 countries, strengthening the reliability of the
findings.

Measuring patient engagement

We identified the following domains of engagement within our review of
the factors influencing patients’ engagement within the general practice
consultation.

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Search for measurement tools

We scanned all questionnaires used in the regulators’ national surveys of

primary care and general practice patients in England1 and the recent Ipsos
Mori national survey of general practice in England (Department of Health
and Ipsos Mori 2009a)2. We also searched bibliographic databases to identify
questionnaires and tools that have explored patient engagement within the
general practice consultation.
We focused primarily on surveys carried out in Great Britain and Northern
Ireland and in Europe. We did not feel that it was appropriate to include
surveys from nations that had a very different primary care system to the
United Kingdom.
In total, we identified 15 relevant questionnaires and five relevant studies.
Nine studies described the use of questionnaires that had been developed by
the researchers as part of their wider studies to explore engagement within
the consultation. Eleven studies reported the development of questionnaires
that were specifically focused on measuring engagement and enablement
within the consultation.
The following questionnaires and tools were identified which explored
patients’ engagement within the consultation.

Questionnaires

■■ Local health services survey and question bank 2008 (2009)

■■ Local health services survey 2003 (2009)

■■ General Practice Patient Survey (Department of Health and Ipsos Mori

2009a)

■■ Consultation satisfaction questionnaire (Poulton 1996)

■■ Consultation and relational empathy measure (Mercer 2004; Mercer

2005)

■■ OPTION scale for measuring patient involvement (Elwyn et al 2003)

■■ QUOTE instrument (Sixma et al 1998, 2000)

■■ Patient intentions questionnaire (Salmon and Quine 1989)

■■ Expectations met questionnaire (Williams et al 1995)

■■ Patient enablement instrument (Howie et al 1998a, 1999a)

1 National surveys of primary care patients – usually titled ‘local health services
surveys’ – were carried out first by the Commission for Healthcare Improvement
(CHI) and later by its successor, the Healthcare Commission (HCC). In 2009 the
HCC was succeeded by the Care Quality Commission (CQC). The CQC has no plans
to carry out national surveys of primary care patients, given that the Department
of Health has commissioned a frequent General Practice Patient Survey. However,
the CQC continues to maintain a question bank of primary care patient experience
questions. Thus, where we refer to a ‘local health services survey (year)’ and follow
this with ‘(2009)’, this denotes a national survey for the regulator, where the relevant
question(s) remain available in the question bank.
2 The General Practice Patient Survey 2008–09, conducted for the Department of
Health in England.

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■■ COMRADE scale – patient-based outcome measure to evaluate the

effectiveness of risk communication and treatment decision-making in
consultations (Edwards et al 2003)

■■ General practice assessment survey (Ramsay et al 2000)

■■ Validation of a questionnaire measuring patient satisfaction with GP

services (Grogan et al 2000)

■■ Development of a questionnaire to assess patients’ satisfaction with

consultations in general practice (Baker 1990)

■■ Medical interview satisfaction scale (Meakin 2002)

Studies

■■ ‘Patients’ priorities with respect to general practice care’ (Grol et al 1999)

■■ ‘Continuity of care in general practice: effect on patient satisfaction’

(Hjortdahl and Laerum 1992)

■■ ‘What makes a good GP: do patients and doctors have different views?’
(Jung et al 1998)

■■ ‘Comparison of patients’ preferences and evaluations regarding aspects

of general practice care’ (Jung et al 2000)

■■ ‘Observational study of effect of patient centeredness and positive

approach on outcomes of general practice consultations’ (Little et al 2001)

The domains of engagement used in measurement

From our analysis of the existing tools and measures, the following domains
of engagement consistently appear.

Listening

■■ GP listens carefully to you all of the time regardless of circumstances –

for example, if they are very busy

■■ GP lets you tell your full story

■■ GP listens to your expectations of your health and care

Involvement in decisions

■■ Involvement to the degree that you want to be

■■ GPs helping you to understand when a choice is required, and what the
choice options are

■■ GPs giving you the time to make choices and the opportunity to
express your opinions about them

■■ GP listening to your concerns about the pros and cons of treatment

options

■■ Opportunities provided to review and revisit decisions

■■ GP acknowledges that the patient has the final choice regarding tests
and treatment

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Information and explanations given and questions answered

■■ Opportunities to ask for enough information about your condition and

treatment choices

■■ Understandable information provided about your condition, treatment

and referral

■■ Enough information provided about the condition (causes, progression

and likely recovery)

■■ Enough information provided about treatment and referral (drugs,

referral options)

■■ Enough information provided about the meaning of symptoms

■■ Confidence in the information provided and in your GP’s knowledge

about your condition and treatment

■■ GP checks your preferred information format

Consultation length

■■ Enough time to discuss your health or medical problem and its

treatment

■■ GP made you feel that you had enough time

■■ Not feeling rushed or as if you are wasting the GP’s time

■■ Fast service during emergencies

Empathy

■■ Have confidence and trust in GP

■■ GP understands what I want from them

■■ Trusted GP enough to tell them personal things

■■ Feel that you are treated with dignity and respect

■■ Felt that you were taken seriously by your GP

■■ Felt GP was interested in you as a person and not just in your illness or
condition

■■ GP willing to learn about my problems and look at things through my

eyes

■■ GP bothered about how illness affects everyday life, family and

personal life

■■ GP showed care and compassion

Suggested indicators
The indicators in tables 2–6 are recommended for use in surveys. Examples
of existing survey questions for each indicator are provided where available.
These questions have all been previously tested for use in postal surveys, or
in questionnaires administered in the general practice.

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Table 2: Indicators for listening and support

Indicators Questions Available in

Listening carefully to what you had to say • Did the doctor listen carefully to what you Local health services questionnaire 2005
had to say? Yes, definitely; Yes, to some (2009)
extent; No Consultation satisfaction questionnaire
(Poulton 1996)
Listening carefully to you even if there was • Does your GP listen to you no matter how National survey of NHS patients 2002
not much time available busy he is? All of the time; most of the (2009)
time; some of the time; never or hardly
ever; can’t say
Letting you tell your full story How was the doctor at: Consultation and relational empathy
• letting you tell your story? measure (Mercer 2004)
• really listening? Patient satisfaction with GP services
(Grogan et al 2000)
• The doctor gives me every chance to talk
about my problems Medical interview satisfaction scale (Meakin
• The doctor gave me a chance 2002)
to say what was really on my mind
• I really felt understood by my doctor
• The doctor did not allow me to say
everything that I had wanted about my
problems
Exploring and listening to your expectations • The clinician explores the patient’s OPTION scale (Elwyn et al 2003)
about your care expectations about how the problems are
to be managed
Allowing enough time to listen to your • During the consultation, a GP should have (Grol et al 1999)
problems enough time to listen, talk and explain to
me
Encouraged to ask questions • I felt encouraged to ask questions (Little et al 2001)
• Understands my emotional needs

Source: King’s Fund (2010)

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Table 3: Indicators for involvement in decisions

Indicators Item description Available in

Involvement to the degree that you want • Were you involved as much as you Local health services questionnaire 2005
to be wanted to be in decisions about your care (2009)
and treatment? Yes, definitely; Yes, to
some extent; No
• Were you involved as much as you Local health services questionnaire (2009)
wanted to be in decisions about the best
medicine for you? Yes definitely; Yes, to
some extent; No OPTION scale (Elwyn et al 2003)
• The clinician asks for the patients’
preferred level of involvement in decision-
making
• The doctor gave me a chance to be
involved in the decisions during the
consultation
• My doctor and I agreed about which
treatment was best for me
• I am satisfied with the way in which the
decision was made in the consultation
• I am sure that the decision made was the COMRADE scale (Edwards et al 2003)
right one for me personally

GP helps you to understand when a choice • Were you given a choice about where Local health services questionnaire (2009)
is required and what your options are you were referred (which hospital)? Yes;
No, but I would have liked choice; No,
but I did not mind; Don’t know/Can’t
remember
• The clinician identifies a problem needing
a decision-making process
• The clinician states that there is more
than one way to deal with an identified
problem
• The clinician lists options including the OPTION scale (Elwyn et al 2003)
choice of ‘no action’ if feasible
• It is clear which choice is best for me
• I am aware of the treatment choices that
I have
• I feel an informed choice has been made COMRADE scale (Edwards et al 2003)
• The decision shows what is most
important to me

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Indicators Item description Available in

GP listens to your concerns about the pros How was the doctor at:
and cons of treatment options • helping you to take control?
• making a plan of action with you? Consultation and relational empathy scale
(Mercer 2004)
• The clinician explains the pros and cons of
options to the patient
• The clinician explores the patient’s
concerns about how problems are to be
managed
• The clinician provides opportunities for OPTION scale (Elwyn et al 2003)
the patient to ask questions
GP gives you time to make choices and the • An opportunity for deferring a decision is
opportunity to express your opinions about provided
them • Arrangements are made to review the OPTION scale (Elwyn et al 2003)
decision (or the deferment)
• The doctor gave me the chance to
express my opinions about the different
treatments available
• The doctor gave me a chance to decide COMRADE scale (Edwards et al 2003)
which treatment I thought was best for
me
Opportunities to review and • I can easily discuss my treatment again COMRADE scale (Edwards et al 2003)
revisit decisions with my doctor
GP respects your choices • A GP should be ready to discuss the (Jung et al 1998)
investigations, treatment or referral that
I want
GP acknowledges that the patient has the • GP should acknowledge that the (Grol et al 1999)
final choice regarding tests and treatment patient has the final choice regarding
investigations and treatments

Source: King’s Fund (2010)

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Table 4: Indicators for information and explanations given and

questions answered

Indicators Item description Available in

Opportunities to ask for enough information • Were you given enough information about Local health services questionnaire 2005
about your condition and treatment choices the purpose of the medicine? Yes, enough (2009)
information; Some, but I would have
liked more; I got no information, but I
wanted some; I did not want/need any
information; Don’t know/Can’t say
• Were you given enough information Local health services questionnaire 2005
about any side-effects the medicine (2009)
might have? Yes, enough information;
Some, but I would have liked more; I go
no information, but I wanted some; I did
not want/need any information; Don’t
know/Can’t say
Understandable information provided about • Did the doctor explain the reasons for
your condition, treatment and referral any treatment or action in a way that you
could understand? Yes, completely; Yes,
to some extent; No; I did not need an
explanation; No treatment or action was
needed
• If you had questions to ask the doctor, Local health services questionnaire 2005
did you get answers that you could (2009)
understand? Yes, definitely; Yes to some
extent; No; I did not need to ask any
questions; I did not have the opportunity
to as questions
• Did that person explain the reasons for Local health services questionnaire 2005
any treatment or action in a way that you (2009)
could understand? Yes, completely; Yes,
to some extent; No; I did not need an
explanation; No treatment or action was
needed
• The clinician checks that the patient has OPTION scale (Elwyn et al 2003)
understood the information

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Indicators Item description Available in

Enough information provided about your • The doctor told me everything about my Consultation and relational empathy
conditions, treatment and referral treatment/care and explained the reasons measure (Poulton 1996)
for advice given
• When you have visited your GP surgery National survey of NHS patients (2009)
in the last 12 months, how often has your
doctor given you enough information
about your condition or treatment? All of
the time; Most of the time; Some of the
time; Never or hardly ever

Health care providers should:

• allow me to see my patient notes
• give information on combinations of
medicines

GP should:
• tell his findings in follow-up consultations
• display information leaflets in their QUOTE instrument (Sixma et al 2000)
waiting room.

• Telling patients all they want to know

about their illness
• During the consultation, a GP should have
enough time to listen, talk and explain to
me
• A GP should tell me all I want to know
about my illness
• A GP should explain the purpose of tests
and treatment in detail
• A GP and other care providers should not (Grol et al 1999)
give contradictory information to me
• The practice nurses do not take care to
explain things carefully
• The doctor doesn’t tell me enough about
the treatment
• The doctor fully explains how the illness
will affect my future health
• I sometimes feel that I have not been Patient satisfaction with GP services
given enough information by the doctor (Grogan et al 2000)
Confidence in the information provided and • I understand my illness much better after Consultation and relational empathy
in your GP’s knowledge seeing this doctor measure (Poulton 1996)
• On that occasion, in your opinion did Local health services questionnaire 2005
your doctor know enough about your (2009)
condition or treatment? The doctor knew
enough; The doctor knew something but
not enough; The doctor knew little or
nothing; Can’t say

• As a result of your visit to the doctor Patient enablement instrument (Howie et al

today do you feel you are able to 1999b, 1998b)
understand your illness?

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Indicators Item description Available in

GP checks your preferred information • The clinician checks the patient’s OPTION scale (Elwyn et al 2003)
format preferred information format

Source: King’s Fund (2010)

Table 5: Indicators for the length of consultation

Indicators Item description Available in

Enough time to discuss your health or • Were you given enough time to discuss Local health services questionnaire 2005
medical problems and its treatment your health or medical problem with the (2009)
doctor? Yes, definitely; Yes, to some
extent; No; I did not need to discuss
anything
• Getting enough time during consultations Grol et al (1999)
• The time I was allowed to spend with
the doctor was not enough to deal with
everything I wanted
• I wish it had been possible to spend a (Baker 1990)
little longer with the doctor
GP made you feel that you had enough time • How much time did you spend with your National survey of NHS patients 2002
doctor? (2009)
• In your opinion was this the right amount
of time, too little time, or too much time?
• Making you feel you had time during (Jung et al 2000)
consultations
Not feeling rushed or like you are wasting • The time I was able to spend with this
the GPs time doctor was not long enough to deal with
everything I wanted
• The time spent with this doctor was a Consultation satisfaction questionnaire
little too short (Poulton 1996)
• Sometimes the doctor makes me feel that
I am wasting his – her time
• I do not feel rushed when I am with the
doctor
• The doctor gives me every chance to talk Patient satisfaction with GP services
about my problems questionnaire (Grogan et al 2000)
Fast service during emergencies • Quick service in the case of emergencies (Grol et al 1999)

Source: King’s Fund (2010)

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Table 6: Indicators for interpersonal care, including empathy

Indicators Item description Available in

Treated with dignity and respect • Did the doctor treat you with dignity and Local health services questionnaire (2009)
respect? Yes, all of the time; Yes, some of
the time; No
Confidence and trust in GP • Did you have confidence and trust in Local health services questionnaire 2005
the doctor? Yes, definitely; Yes to some (2009)
extent; No
• Sometimes the doctor makes me feel I
am wasting his/her time
• I don’t feel confident discussing my Patient satisfaction with GP services
problems with the doctor questionnaire (Grogan et al 2000)
GP understands what I want from them • A GP should understand what I want from (Grol et al 1999)
him or her
Trusted GP enough to tell them personal • I feel about to tell this doctor about very
things personal things
• I would find it difficult to tell this doctor Consultation satisfaction questionnaire
about some private things (Poulton 1996)
Feel you are taken seriously • Does your GP take your opinions National survey of NHS patients 2002
seriously? All of the time; most of the (2009)
time; some of the time; never or hardly
ever; can’t say
Felt GP interested in you as a person and • I thought this doctor took notice of me as
not just in your illness a person
• This doctor was interested in me as a Consultation satisfaction questionnaire
person not just my illness (Poulton 1996)
• The doctor seemed interested in me as a Medical interview satisfaction scale (Meakin
person 2002)
• A GP should take a personal interest in (Grol et al 1999)
me as a person and in my life situation
• I thought the doctor took notice of me as
a person
• The doctor was interested in me as a
person and not just my illness
• There are some things this doctor does (Baker 1990)
not know about me
• I felt this doctor really knew what I was
thinking
GP willing to learn about my problems and • I felt this doctor really knew what I was Consultation satisfaction questionnaire
look at things through my eyes thinking (Poulton 1996)

GP should:
• be able to look at things through my eyes
be willing to learn about patient’s problems QUOTE instrument (Sixma et al 2000)
GP bothered about how illness affects • The doctor always asks about how my Patient satisfaction with GP services
everyday life, family and personal life illness affects everyday life (Grogan et al 2000)
• Was interested in the effect of the
problems on my family or personal life
• Was interested in the effect of the (Little et al 2001)
problem on everyday activities

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GP Inquiry Paper

Indicators Item description Available in

GP showed care and compassion • How was the doctor at showing care and Consultation and relational empathy
compassion measure (Mercer 2004)

Support items:
• want to receive comfort (Williams et al 1995)
• want help with emotional problems

• The doctor seemed warm and friendly to Medical interview satisfaction scale (Meakin
me 2002)

Source: King’s Fund (2010)

Recent, current and future measurement

This section describes the recent, current and future measurement of patient
engagement in primary care in England.

Voluntary surveys

Any GP or GP practice may at any time decide to secure patient feedback.

Between 2003 and 2008, practices had an incentive to conduct their own
surveys using approved instruments, as there were financial rewards within the
Quality and Outcomes Framework. As this has been replaced by the General
Practice Patient Survey it is likely that the number of practices carrying out
additional voluntary surveys will have decreased significantly.

Regulators’ surveys

From 2002 to 2008, national surveys of patients using local health services
were carried out by the successive health care regulators. These used similar
questionnaires and methods to the other surveys in the national programme in
England, such as the annual survey of hospital inpatients.
However, the regulators were not responsible for regulating primary care at the
practice level, so these surveys were designed to report to primary care trusts
about patients’ experience of primary care in their local area. The relatively
small patient samples, and the fact that results could not be traced back to
specific practices for the purpose of quality improvement, limited the value of
the results.
However, the aggregated results did give a reliable picture at a national level of
patients’ experience of primary care across England. These were used, among
other things, for reporting on the achievement of Public Service Agreement
targets.
The current regulator – the Care Quality Commission – has no plans to continue
these surveys.

General Practice Patient Survey

The General Practice Patient Survey (GPPS) was first initiated as a national
survey of patients’ access to primary care services, and as a means to monitor
(at practice level) the achievement of government targets to improve access,

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such as the target that every patient should be able to see a GP within 48
hours (Department of Health and Ipsos Mori 2009a).
In 2008, the Department of Health commissioned a three-year programme of
the GPPS, to be carried out quarterly.
The GPPS differs from the two types of surveys discussed above, in several
ways.
■■ It is carried out by direct commission from the Department of Health.

■■ It aims for a massive increase in scale – it is mailed to more than 5

million people, and in 2008/9 more than 2 million responded.

■■ It returns results for every general practice in England. These results

are linked to the QOF incentives for patient experience.

The questionnaire used in the first national survey was not comparable either
to the preceding (access-related) GPPS, nor to the regulators’ surveys. This
interrupted the longitudinal data, so national trends over time cannot easily
be identified.
Within the GPPS there is a smaller set of questions relating to the actual
consultation with the GP than was included in the regulator’s survey. For
example, questions relating to the prescription of new medicines were not
included, although this is the specific decision most commonly made in
primary care (around half of patients responding to the regulator’s survey
said they had been prescribed a new medicine), and provides a concrete
example of the degree to which many patients were informed about,
understood and engaged in a specific treatment decision.

Appraisal and revalidation

From 2011 all GPs will need to be relicensed and revalidated at least every
five years. Appraisal within this framework must involve an element of
patient feedback. For many GPs this will need to take place twice within the
five-year period, although the Royal College of General Practitioners also
recommends that a GP who has received good reports from patients in the
first exercise may not need to carry out the second (RCGP 2010a).
Questionnaires will need to adhere to the General Medical Council’s criteria
for GP revalidation. At the time of writing, independent research analysts
working for the RCGP had assessed three instruments as meeting these
criteria and as having been sufficiently tested for reliability. It is likely that
other existing questionnaires will be redeveloped specifically to pass these
thresholds.

Recent results from national surveys

The last regulator’s survey in 2008 reported the following results with regard
to GP consultations (where comparisons are to 2005):
Patients reported improvements in most aspects of doctors’ personal
skills. The proportion of people who said that the doctor ‘definitely’
listened carefully to what they had to say increased from 82% to 83%.
A greater proportion of patients felt that they had ‘definitely’ been given
enough time to discuss their problem with the doctor (76% compared

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with 74% in 2005) and 77% received explanations regarding treatment or

action in a way that they could completely understand.
However, the survey showed that not all aspects of doctors’
communication skills have improved. While in 2005, 77% of respondents
said they ‘definitely’ got answers to their questions that they could
understand, this decreased to 75% in 2008.
There was an improvement in the percentage of people who felt that they
were involved as much as they wanted to be in decisions about their care
and treatment: 70% said this was ‘definitely’ the case compared with 69%
in 2005. The vast majority (93%) felt that they were treated with respect
and dignity ‘all of the time’ and 77% stated that they ’definitely’ had
confidence and trust in the doctor.
With regard to those patients who were prescribed of new medicines (54 per
cent of total respondents), it reported the following results:
There has been a decrease in the percentage of people who said that they
had been given enough information regarding the possible side-effects of
their medication: 59% said this compared with 61% in 2005. Likewise,
a smaller percentage than in 2005 said that they had been given enough
information on how to use the medication: 85% in 2008 compared with
86% in 2005.
Furthermore it noted that:
While… a greater proportion of patients report full involvement in
decisions about their care and treatment, this is not reflected when it
comes to dealing specifically with medication. There has been no increase
in the proportion of people who ‘definitely’ felt involved as much as they
wanted to be in decisions about the best medicines for them; this has
consistently been around 60% in the last few years. This means that four
in ten people are not feeling as involved as they would like to be…
(Healthcare Commission 2009)
Results from the General Practice Patient Survey conducted between January
and April 2009 (Department of Health and Ipsos Mori 2009b,) were as
follows:
Most say that their doctor is good at the following: gives enough time
(90%), asks about symptoms (88%), listens to them (89%), explains
tests and treatments (79%), involves them in decisions about their
care (73%), treats them with care and concern (85%), and takes their
problems seriously (84%).

Variation in patient responses

Using data from the regulator’s survey 2008, Picker Institute Europe
produced an analysis of variation in the way patients reported their
experience of involvement in decisions about care and treatment in primary
care ((Picker Institute Europe 2009)). It found that:
Patients who described their ethnic group as white are more likely than
patients from other ethnic groups to say that they:
■■ were ‘yes, definitely’ involved as much as they wanted to be in
decisions about their care and treatment

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■■ were ‘yes, definitely’ involved as much as they wanted to be in

decisions made in primary care about the best medicine for them.

Table 7 Primary care: patient involvement in decisions

Primary Were you involved as much as you wanted to Were you involved as much as you wanted to
care survey be in descisions about your care and treatment? be in descisions about the best medicine for you?
2008 Yes definitely Yes, to No Yes definitely Yes, to No
some extent some extent

Self-defined ethnic
% % % % % %
group

White 72 24 4 61 29 10

Asian or Asian 54 36 10 54 36 10
British

Black or Black 57 33 10 46 31 23
British

Source: Picker Institute Europe 2009

The analysis also showed that ‘older people were more likely than younger
people to say that they were ‘yes, definitely’ involved in decisions about their
care and treatment, and in decisions about the best medicine for them’.

Table 8: Primary care: patient involvement in decisions by age and

gender, 2008

Primary care Men Women

survey 2008 16–35 36–50 51–65 >65 16–35 36–50 51–65 >65
“‘Yes definitely’
involved as
% % % % % % % %
much as wanted
to be”
“… in decisions
about your care 58 66 73 78 61 69 74 77
and treatment

“… in decisions
about the best
50 53 59 66 56 58 63 64
medicine for
you”

Source: Picker Institute Europe 2009

There is extensive data from the GPPS that makes available responses to
every question, from every practice and health centre, weighted to take
account of age, gender, etc(GP Patient Survey 2010)We were unable to
locate a secondary analysis of the variation within this data. The full patient
data would need to be made available to carry out such an analysis, and in
any case the exercise is beyond the scope of this report.

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Measurement issues for consideration by the Inquiry

The Inquiry into the Quality of General Practice in England commissioned by

The King’s Fund wishes to identify the key elements of quality in primary care
and the best indicators with which to measure those elements.
With regard to patient engagement in consultations, we have so far shown
that there is a widespread consensus among regulatory and professional
bodies, shared by patients and GPs, about which are the most important
domains. We have further shown that within these domains it is not difficult
to identify sets of indicators, and that there is a very good availability of
specific questions that can produce these indicators, for use in patient
feedback instruments.
So, the task of recommending what and how to measure should be easier in
this particular field of primary care quality than in some others.
However, while identifying indicators (and their availability) is not
problematic, the choice of indicators within the current regimes of the English
NHS is potentially very problematic, and will depend above all on what would
be the specific use or purpose to which they would be put. The factors that
complicate these choices are set out below.

The extent to which the nature of current or future data collection

affects the choice criteria

Since late 2009 there has been only one source of data routinely collected
on patient engagement in primary care in England: the GPPS. If immediate
availability (and therefore reduced additional cost) is a critical factor, then the
consultation questions in the GPPS would be chosen.
However, this set of questions does not incorporate all the key domains of
engagement identified in preceding sections. It does not include any specific
examples of an action or decision that would test doctors’ ability to engage
their patients, such as the prescription of a new medicine.

Whether the indicators are to be used in measuring the

performance of individual GPs or of their general practice
organisations

Most instruments have been developed either for one purpose or the other.
For example, the GPPS and the regulator’s survey were designed to report
at the level of the general practice. This tends to mean that they include
organisational questions (relating, for example, to access, appointments
procedures, the provision of choices, and so on). Inevitably that limits the
range and detail of indicators relating to the consultation itself.
In contrast, where measures are required for use in the assessment of
education and training, or for appraisal, it is possible to include greater
focus on specific skills and competencies within the engagement domains.
Indeed, that content will increasingly be mandated by the requirement to link
questions to the specific skills, learning outcomes and attributes required by
the GMC.

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Whether there is any preference for a particular type of

measurement reflected in the framing of questions and response
options

Some questionnaire instruments use patient satisfaction questions to

produce their indicators. Such questions generally ask patients to rate the
GP, on a scale from poor to good, in relation to the various competencies
being measured. For example, the GPPS asks patients to rate on a five-
point scale how good the doctor was at listening, answering questions and
involving the patient in decisions.
The patient satisfaction questionnaire, produced by the RCGP for GP
qualification, asks patients to rate the doctor at (for example): ‘really
listening’, ‘explaining things clearly’ and ‘making a plan of action with you’,
against a seven-point scale ranging from ‘poor to fair’ to ‘outstanding’.
Satisfaction-style questions have been criticised for being subjective and
unreliable, and for providing insufficient information to enable the person or
organisation receiving the feedback to understand what the rating means
and how they could take action to improve it.
Patient experience measures were initially developed in the United States,
in an attempt to improve on ratings questions, by asking patients to report
factually on whether something actually happened. This is the format used
by Picker Institute Europe, and by the Care Quality Commission in national
patient surveys. Thus, the primary care survey 2008 asked questions such
as ‘Did the doctor listen carefully?’, ‘Did you get answers in language you
could understand?’, ‘Were you as involved in decisions as you wanted to be?’,
and the response options ask patients for a decisive answer such as ‘Yes,
definitely’, ‘Yes, sometimes’, or ‘No.’
Given Picker Institute Europe’s long history of developing and adhering to
the patient experience method, as opposed to satisfaction ratings, and our
advocacy for the method’s greater reliability, our researchers cannot do other
than recommend questions in that format.

Conclusions
Our review of studies of patient and GP perceptions of the factors that enable
patient engagement found that patients and GPs consistently identified very
similar themes to each other. From these themes, we identified the following
domains of engagement in primary care consultations, acceptable to patients
and GPs alike:
■■ agreement and understanding of patient and GP responsibilities

■■ assessing and expressing needs and wants regarding engagement

■■ confidence in engagement

■■ consultation length

■■ understanding of the impact of contextual factors (such as time and

resources) on the consultation

■■ training and support for engagement

■■ informational support

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■■ respect

■■ continuity of care.

We searched the tools and measures that were available to assess and
monitor patient engagement in general practice consultations. We found
many instruments, and classified the common domains of measurement as:
■■ listening

■■ involvement in decisions

■■ information, explanation, questions being answered

■■ consultation length

■■ empathy.

On the basis of these two reviews, we are able to suggest, in Tables 2 to 6:

■■ a set of indicators for measuring the quality of patient experience
within these domains

■■ a list of potential questions capable of monitoring these indicators

■■ existing sources from which to draw those questions.

There has not been consistently useful measurement of the quality of patient
engagement in primary care in England. National surveys for successive
regulators from 2002 to 2008 did not provide results at individual practice
level, and were therefore not useful for quality improvement. The subsequent
GPPS does provide practice-level results, but with questions that could be
considered to be limited in value.
Results from the most recent national surveys show that patients report high
levels of patient confidence and trust in GPs, and good (probably improving)
experience of doctors’ communication skills. However, significant numbers of
patients are reporting that they had not been as involved in decisions as they
wanted to be.
Although there is a good availability of measures and indicators for patients’
experience of engagement in the consultation, there are also various issues
for consideration by the inquiry in relation to choosing which measures to
recommend.
These issues include:
■■ the nature of current and future data collection

■■ the purpose of measurement and the level at which it is required

(individual practitioner, primary care practice; specific practice or
comparison across practices)

■■ preference for research methods (for example, to report on

‘satisfaction’ versus ‘experience’).

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2 Patient involvement in development of services

This chapter focuses on the involvement of patients in monitoring and

developing services offered within general practice (as opposed to engaging
patients in decisions about their own care). As we shall see, some patient
participation groups provide additional or enhanced services for their
practices, which may be helpful to some individual patients. However, in
general we would expect the impact of involvement to be valued in terms of
improved quality of the service overall.
We have not found it helpful to define (and therefore limit) exactly what
we mean by general practice services when discussing the involvement of
patients in their development. We have focused on the traditional family
doctor or health centre services, and have not considered the role of non-
executive directors on PCT boards.
While it is difficult – not to say dangerous – to make generalisations about
what a good general practice service would look like, we can suggest some
key factors.
Patients want:
■■ their health care professionals to have excellent interpersonal skills, as
well as demonstrable up-to-date clinical knowledge and the willingness
to provide timely and meaningful information

■■ easy access to their clinicians

■■ clean, accessible premises

■■ continuity of care and smooth handovers between health care

professionals

■■ opportunities to take part in their own health care

■■ a sense that the best possible care will be available when they need it

■■ to understand that this care will be equitably distributed, and that

public money is being used efficiently.

Background

National drivers of patient involvement in the development

From the perspective of national policy-makers, general practice is a subset

of the pan-NHS ambition to put ‘patient and public engagement’ at the centre
of services. Most recently, world class commissioning, the NHS Next Stage
Review, the resulting NHS Constitution, and the Primary and Community
Services Strategy all signal the importance of such involvement (Department
of Health 2008d).
The final report of the NHS Next Stage Review committed the ‘local NHS’ to
involve patients, carers, the public and other key partners and to work with
them openly and collaboratively (Department of Health 2008c).
There is also a recently revised legal duty (under Section 242 of the
consolidated National Health Service Act 2006) on NHS trusts, PCTs and
strategic health authorities (SHAs) to make arrangements to involve patients

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and the public in an ongoing manner in service planning and operation, and
in the development of proposals for changes.
The specific local level of the GP practice or health centre is rarely referred
to in these broad policy documents, and is not referred to in the 2006 Act
or associated guidance except in relation to practice-based commissioning
clusters (Department of Health 2008f).
The following government initiatives have been developed to facilitate
patients’ involvement within the development of health and social services.

Local involvement networks

Local involvement networks (LINks) aim to identify what people like and
dislike about their local services, and to work with service providers and
commissioners to help make them better (Department of Health 2008b). At
the time of writing LINks are still developing, and the government’s stated
aim is that they should grow organically at a local level. LINks have a much
wider brief than primary care, since they cover the local economy of both
health and social care.

World class commissioning

World class commissioning (WCC) is a statement of intent designed to raise

ambitions for a new form of commissioning that is hoped to encourage
patient engagement and greater involvement within the commissioning
process (Department of Health 2007b).
World class commissioning competency 3 requires primary care trusts
(PCTs) in England to ‘proactively seek and build continuous and meaningful
engagement with the public and patients, to shape services and improve
health’ (Department of Health 2007a, ).
The vision and guidance for this competency were being revised at the time
of writing. In the world class commissioning assurance framework, published
in June 2008 (Department of Health 2008a), the indicators for reaching level
2 (out of 4) for this competency were that:
■■ the PCT has a strategy in place that actively and continuously engages
patients and the public in PCT business

■■ the PCT actively listens to, understands and responds to the public and
patients

■■ the PCT can demonstrate how local involvement, including regular two-
way dialogue with local involvement networks (LINks) or equivalent
patient forums, has influenced some aspects of commissioning

■■ the PCT proactively disseminates information to the public and patients

■■ the local population somewhat agrees that the local NHS listens to the
views of local people and acts in their interest.

Quality and Outcomes Framework

The Quality and Outcomes Framework (QOF) is a system for the performance
management and payment of GPs in the NHS in England, Wales, and

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Scotland. It was introduced as part of the new GMS contract in April 2004,
replacing various other fee arrangements.
The QOF was intended to improve the quality of general practice by
rewarding GPs for implementing ‘good practice’ in their surgeries.
Participation in the QOF is voluntary for each partnership. However, for the
majority of GPs under the preset contract, the QOF is almost the only area
where they are able to make a difference to their income.
In the original 2004 contract, each general practice could accumulate
up to 1,050 ‘QOF points’, with a payment for each point gained for each
of 146 indicators. The criteria were grouped into four domains: clinical,
organisational, patient experience and additional services. These four
domains have been retained, while the indicators are revised and developed
each year.
The patient experience domain focuses on the measurement of patient
experience, including length of appointment and ease of access. These
payments are now linked to scores in the GPPS.
As yet, there are no additional QOF points for engaging patients in the day-
to-day management of the practices. Some PCTs are running additional
incentive schemes – for example, NHS Hammersmith and Fulham’s ‘QOF
plus’ initiative includes 11 extra indicators under the patient experience
domain. However, even here the inclusion of patients and the public at an
organisational level is still not rewarded.
There are local incentives available for practices to set up a patients
participation group (PPG). About 40 per cent of practices have a PPG. At
the time of writing, the Royal College of General Practitioners, the British
Medical Association, the NHS Alliance and the National Association for Patient
Participation are running a group initiative focusing on ‘growing patient
participation’.

Practice-based commissioning

Practice-based commissioning (PBC) is a Department of Health initiative

designed to target financial drivers towards primary care and increase clinical
involvement in commissioning. All practices receive information on how their
patients use health services that can be used for the redesign of services by
frontline staff.
PBC is a voluntary undertaking by practices, and governance frameworks are
set at a local level. The PCT remains the responsible authority. Department of
Health guidance mentions ‘stakeholders’ rather than patients specifically:
PCTs and practices must work with other stakeholders in PBC redesign
of services. PBC involves frontline clinicians to commission services that
better meet the needs of patients. When designing a new service, PCTs
should ensure that relevant partners have been consulted appropriately.
(Department of Health 2010)

Recent evidence regarding PPI in primary care

In 2007, and again in 2009, Picker Institute Europe surveyed PCTs to gather
information about their approaches to PPI within commissioning. In 2009, we
reported that:

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In most PCTs, World Class Commissioning has helped to drive change

in organisational culture and boost the status of patient and public
engagement – of itself, and–or by complementing pre-existing local
drivers.
The cultural shift means that PCTs are working towards earlier, more
systematic and more strategic engagement; corporate responsibility
for engagement as ‘everyone’s job’; joined-up working with other
organisations; and stronger links between engagement and external
communications.
Executive and managerial responsibility has shifted upward, and
engagement has come to be seen as a PCT-wide ‘must do’.
(Picker Institute Europe 2009b)
However, the 2009 survey report also noted that ‘PCTs are not yet in a
position to demonstrate whether and how patient and public engagement
influences commissioners’ decisions’ (Picker Institute Europe 2009b).
There was a concern expressed that much of the commissioning process
looked at user involvement in terms of ‘data needs’ for commissioning,
and still gave more weight to surveys and one-off consultations than to
ongoing dialogue. Many of the existing involvement methods seemed to
be much more targeted at gathering feedback from users than at creating
opportunities to directly shape health services.
Looking for evidence closer to the GP practice, we analysed the data supplied
by GP practices in the national GP practice based commissioning survey
(Department of Health 2009). Figure 1 shows showing the changes in
responses from practices involved in practice-based commissioning waves,
from data published by Neil Parkinson.
Since the onset of PBC in 2006, the number of practices that have declared
themselves as not engaging with their local population has reduced from 39
per cent to 18 per cent. The association may be coincidental, but it is likely
that the advent of PBC has led more practices to engage with their patients.
The chart also shows that practices were increasingly involving patient
representatives, patient groups and events, and relying less and less on ad
hoc methods.
Picker Institute Europe’s 2009 survey of PCTs (Picker Institute Europe
2009b) showed that PCTs themselves have been using a widening range
of techniques to engage with their populations. Although public meetings,
formal consultations and surveys were still heavily relied upon, 40 per
cent of PCTs said they were using other methods, giving examples ranging
from deliberative events to involving the public in the governance of
commissioning.

Rapid review of involvement initiatives

Aim and method

We aimed to identify England-based initiatives that focused on involving

patients in the development of general practice services.
We made contact with a range of interested parties, using a mixture
of existing contacts, internet searches (using terms such as ‘patient

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Figure 1: How, if at all, do you engage with your local population for
practice-based commissioning purposes?

Source: Department of Health (2009)

Figure 2: Patient and public engagement methods used in the last 12

months

Source: (Walsh et al 2009)

public participation and engagement’) and following up leads. We used

a snowballing approach with a view to identifying initiatives of note that
focused on increasing patients’ involvement in the development of general
practice services.
Following our internet searches and our existing experiences within the
field of patient and public participation, we initially contacted the following
organisations:
■■ Coventry PCT

■■ Gloucestershire PCT

■■ Health Services Management Centre

■■ Liverpool PCT

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■■ Milton Keynes PCT

■■ National Association for Patient Participation

■■ National Association of Link Members

■■ NHS South West

■■ Norfolk PCT

■■ Shropshire PCT

■■ Somerset PCT

■■ South Staffordshire PCT

■■ Trafford PCT.

In the monthly e-bulletin of Picker Institute Europe, which has about 4,000
subscribers (individuals and organisations) interested in patient-focused
care, we published a request for examples of notable practice in engaging
patients in the development of general practices.
Unfortunately the period of fieldwork coincided with the peak holiday season,
and we had to take a pragmatic approach when selecting interviewees for the
next stage. Extended interviews were undertaken with representatives from:
■■ the National Association of LINk Members

■■ the National Association of Patient Participation

■■ NHS Norfolk

■■ Nottinghamshire PCT

■■ Principia PBC

■■ Shropshire PCT

■■ staff from two practices in different regions.

Findings from each of these sources are described in the section that follows.

Findings

In this section we use data from our interviewees to describe the issues
around implementing the various patient-involvement methods in the
development of general practice services. Quotations are anonymised except
where extracted from published sources.

LINks

It was hoped that LINks would be major players in involving patients and
the public in monitoring and developing general practice services. However,
the overall impression is that – with a few notable exceptions – many are
struggling to have any sort of relationship with GP practices at all.
Historically, the preceding organisations had little powers over GP surgeries
but had:
… an active but adversarial engagement with family doctors.
LINk member

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However, the changes in the organisations tasked with monitoring health

care have left a sense of dislocation for many people. The majority of LINks
are struggling to do their best, with an extraordinarily broad agenda and
limited resources. For many, building a relationship with general practices
within their sometimes large geographical areas is not at the top of the
agenda.
There is some discussion about whether health overview and scrutiny
committees have a role to play, but it is probably true to say that involving
patients in their deliberations is outside of their brief.
Several of the interviewees we spoke with felt that their LINks were not a
factor in their areas:
In deference to LINks, we are much closer to the problem.
Lay member, PBC board

We are doing what the LINks were set up to do.

Patient representative, PBC

Patient participation groups

The majority of patient involvement activity in general practice takes the

form of developing patient participation groups (PPGs). Some primary care
trusts – for example, Liverpool, Shropshire and Norfolk – are encouraging
every practice to consider developing a PPG, and are supporting them with
materials and even small budgets to achieve this aim.
Most PPGs operate within GP surgeries and health centres. Unlike LINks,
there is no legal requirement for them to exist, so they come into existence
almost as an act of goodwill on the part of the practice, drawing on the
enthusiasm of patients. For this reason, they are very varied organisations
with different priorities that reflect local needs as well as the interests and
energies of the people involved. However, as the NHS becomes more overtly
patient centred their importance has increased, and they are seen by some
as the basic building block of patient and public involvement within primary
care.
According to the National Association for Patient Participation (NAPP),
around 40 per cent of practices now have some form of group or association
of patients. Some have been formed as a result of local public activity,
focusing around the practice. Some arose from an interest in consumerism
by individual GPs. Yet others, in London and Wales, have their roots in the
political beliefs of left-leaning clinicians.
PPGs first emerged in the early 1970s, and by 1979 the National Association
for Patient Participation in General Practice (NAPPGP) was formed. Initially, it
had 19 affiliated members, but the membership has grown quickly. By 1988,
the number reached 80, by 2006 there were 270, and at the time of writing
there were more than 400 affiliated organisations.
There is currently a concerted campaign by NAPP, the RCGP and the NHS
Alliance, supported by the Department of Health, called Growing Patient
Participation, aiming to increase the number of PPGs. The ambitious target is
to have a PPG in every practice in the country within one year.

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NAPP has researched the reasons why some practices are hesitant to have
PPGs. Dr Graham Box, chief executive of NAPP explained:
From our research it’s pretty clear that practices are worried about the
time that would be involved in setting up a group. They’re worried about
the kinds of patients who might come forward who might make it awkward
to run the group. And equally they’re legitimately concerned about
representing the wider population.
(Box 2009)
He added that much of the material now available is designed to meet these
needs:
We’re going to be rolling out resources we think will meet the needs we’ve
heard about from the people we’ve spoken to. The starting point is a step
by step guide, so that the setting up of a group is made as easy as possible
for practices.
(Box 2009)
Some PCTs have been supporting the initiation and growth of PPGs with
materials, staff time and seed-corn funding. Indeed, the step-by-step guide
referred to above credits a Norfolk PCT guide on which it is based.
The Growing Patient Participation initiative includes a national ‘Make a
difference’ fund, to which local organisations can make bids for small grants
of under £4000 to develop their work. In some cases the practice cross-funds
the PPG, or supports it with administration or by providing space. In many
cases, the funding goes the other way: many groups see fundraising for the
practice as one of their key roles.
The PPG at one practice in Lincolnshire raises such a volume of money
that not only is it providing equipment for the surgery (including clinical
apparatus) but has managed to support a half-time post within the practice.
This post provides direct support and information for patients, and is seen as
an integral part of the practice’s work. Patients receive advice about things
such as benefits, blue badge schemes and other services available, as well
as health advice. It is popular among the patients as well as the clinical staff,
who know that they can refer patients to the ‘library’, where they will receive
more time and support than is available in an appointment slot.
The value of a PPG for the practice seems clear from a strategic standpoint.
Dr Graham Box explains:
They’re the way the practice connects to the community. They’re the way
the practice makes sure that what it’s offering is what patients want.
(Box 2009)
Professor Steve Field, GP and Chairman of the Royal College of GPs, added:
This is so important for taking the health service forward at a local and
national level. GPs need to be emotionally engaged in this to understand
the benefits for them and for the practice, as well as for the patients that
they serve.
(Field 2009)
However, there are some limitations to – and criticisms of – PPGs. One
interviewee referred to the relationship between PPGs and their practices as:

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… lacking a certain vigour.

NALM member
Some commented that some individuals joined the PPG because it conferred
a social status. Others made reference to the fact that the typical PPG was
populated almost exclusively by white middle-class retired people, and that
the overwhelming impression was of a ‘cosy’ relationship with the practice.
NAPP prefers PPGs not to be ‘doctors’ fanclubs’. However, the fact remains
that the majority of groups are not in any kind of challenging relationship
with their practices.
Other interviewees stressed the need for the PPG and its representatives
to be accepted by the practice hierarchy. They talked about needing to be
‘on the inside’ to influence things. However the ‘cosy’ relationship can be a
limitation for some activists: as one commented, ‘If we are not pokey we
are nothing’. There seems some acknowledgement of this from the health
professional’s side:
They [PPGS] are huge supporters. They are almost never adversely critical
and almost invariably allies.
Dr Laurence Buckman, GP and Chairman of the BMA’s General
Practitioner’s Committee, podcast
PPGs are not pressure groups, and nor would they ever claim to be. The
vast majority exist at the behest of, or certainly with the permission of the
practice. Their role is not necessarily to influence the day-to-day running
of the practice or to set agendas, but to provide the practice with a ready
feedback. They, and the practices, see their role as to augment the health
care function rather than to manage their practices:
We provide some of the things that the practice can’t pay for.
PPG co-ordinator

We’ve got two patients that run the herb garden, the organic garden.
We’ve got patients running the integrated library; some meeting and
greeting, some organising evening lectures; one ex-school teacher
organising an art display in the waiting room from the local primary
schools on health and art. So, just about every aspect of health being
covered.
Dr Mike Dixon, GP and Chairman of the NHS Alliance, podcast
There is much less evidence of PPGs being used to influence the management
and service delivery of practices as a whole, despite the aspirations of some:
I’m against patient groups just fundraising – it’s not what they are there
for, any more than they are there to be complaints mechanisms. They are
there to be critical friends.
PBC lay member

This function [aiding feedback and responsiveness of the practice as

whole] is no more complex than running health promotion events or
improving communication, but it seems to happen less frequently.

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Dr Has Joshi, Vice Chair, Royal College of General Practitioners (RCGP) and
Dr Brian Fisher, MBE, former GP and Patient and Public Involvement Lead
for the NHS Alliance
We interviewed one practice that had been recommended to us as having
a particularly active PPG. The practice happened to be recruiting a new GP
partner. There was no intention to include the PPG or its members in any of
the recruitment process. Practices are independent entities, and there is no
compulsion on them to include patients, service users or other stakeholders
in any decision-making – but this seemed an opportunity missed.

Other models

Some practices are investigating the idea of having a citizens’ panel model,
with a virtual panel of volunteers who are surveyed regularly (by post or
email) in order for the practice to gauge reaction to proposals.
Some larger primary care organisations have been organising reference
groups of existing stakeholders and patients, usually around issues such as
re-building or re-provisioning.
We found several examples of recognisable public meetings or exhibitions
run by practices or primary care organisations – usually around single issues,
such as developing a new health centre.
There is some interesting involvement work, probably beyond the reach of
most practices, that involves taking a community development approach to
improving health care services.

Practice-based commissioning clusters – some notable practice

One of the challenges of this review has been the huge diversity of different
models of PBC consortia and, inevitably, the very different ways in which
each has tried (to some extent) to involve its local population:
When they brought in the idea of PBC, there was a lot of hope that this
would give a lot of people the opportunity to get involved in decision-
making.
NALM member
This interviewee went on to express their disappointment that this had not
materialised. However in our (admittedly limited) review we found a number
of engaging initiatives that probably represent some of the most interesting
work in the field, some examples of which are cited in the section that
follows.

Three examples of notable practice

In this section we consider some examples of notable practice in involving
patients in the development of their general practice services. These were
not selected because they were ‘typical’ but because they demonstrate, in
some depth, a variety of approaches to patient involvement.
The first example looks at two health centres with patient forums. One forum
has gone down a route of formality, with designated officers and control of
the agendas and conduct of meetings, while the other has opted for a looser,
less formal approach, as a ‘friend’ of the centre.

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The second example looks at a practice-based commissioning structure

that is strongly guided by the PCT and is trying to federate existing and new
practice representatives into a new and dynamic network.
The final example looks at a different kind of consortium, driven more by
the practices themselves, in which patient representatives are integral and
essential to the decision-making process, and that is looking to broaden its
constituency with an area-wide health forum.

Aims and method

The aims were:

■■ to develop three case studies of examples of notable practice of
patient involvement in the development of general practice services

■■ to identify lessons for commissioners and service providers wanting to

increase patient involvement in the development of their local general
practice services.

From the original review of existing patient involvement initiatives within

general practice, we approached a number of organisations that had been
identified for more intensive follow-up.
These case studies were chosen not because they were typical (in fact, one
of them is probably unique), but because their approach differed from the
norms of patient and public involvement and offered some learning for other
practices or primary care organisations.
The researcher followed up a series of case studies by observing the work in
action and interviewing key stakeholders in the initiative, including patients,
health professionals, and those involved in organising the initiative. The
aim of the case studies was to develop a clear description of the initiative,
including the facilitators, and to identify the challenges to running it and to
truly involving patients. The three most innovative and useful studies appear
below.

Notable practice 1: Successful but different patient participation

groups

Whaddon House Surgery’s patient forum and Exmoor Medical

Centre’s patient participation group

The Whaddon House Surgery in Bletchley, Milton Keynes will be moving to

brand-new, purpose-built premises during 2010. The Exmoor Medical Centre
in Dulverton, Somerset, moved to its new premises on the outskirts of the
town in 2008.
Both practices have very active and successful patient participation groups
(PPGs). These were brought into existence some years ago, so they have not
been part of the current wave of ‘growing patient participation’), and both
arose from initiatives by the practices themselves. They are both successful
in achieving similar aims, but they differ fundamentally in their structures
and outlooks. It is worth considering their similarities and their differences.

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Whaddon House Surgery’s patient forum

Whaddon House Surgery’s patient forum was inaugurated in 2006.

Discussions had started the year before, when the appointment of a new
office manager coincided with the visit of a lay assessor as part of the QOF
inspection:
Basically, she hauled us over the coals – wonderfully so. It was quite
an eye opener when she asked things like ‘How do you talk with your
patients?’
Practice manager
Having agreed that some form of patient group was the way forward, the
office manager and business manager advertised in the waiting room. At
the same time, the GPs were tasked with identifying and inviting possible
participants. The practice approached the inaugural meeting with some
apprehension:
We just collected a load of names, and literally called a meeting.
Practice manager
Seven patients attended:
We all came out on a high thinking ‘How fantastic!’
Practice manager
At the time, the practice was not aware of any guidance on setting up a PPG,
which has become more accessible since, so the growth of the group was
more organic:
We didn’t really know what we wanted or what they wanted from us – at
that time there were no guides.
Practice manager
One thread running through their deliberations has been the development
of the new premises, which gave them a rewarding issue for discussion.
It also had the advantage of sourcing a key individual (the forum eschews
formal roles such as secretary, chair and treasurer) who came from a building
development background and was able to add to the practice’s deliberations
around the new premises.
Another key issue in the early days was the consideration of the GPAQ
(patient feedback) data:
Our members are very challenging… I knew straight away, when
somebody asked to see last year’s results and [those of] the year before.
Practice manager
The forum member to whom we spoke does not see his role or the role of the
group to be that of holding the practice to account, but sees the relationship
to be a partnership:
I don’t see that our role is to hold the practice to account – I see us as
being there to work with the practice to improve the services. That is our
aim in life. I guess any service can always be improved.
PPG member

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The thing I am proudest of with the patients’ forum is that we have

reduced the number of DNAs [did not attends – in other words, missed
appointments].
PPG member
This individual gives a large amount of his time to the forum and to related
patient representation activities. He has expanded his role to participate in
the LINk, and to become a patient representative on the steering group of
Health MK, which is the local practice-based commissioning (PBC) cluster.
He spends considerable amounts of his time with the local primary care trust
(PCT) trying to encourage the development of PPGs in the other practices
within the area.
In this respect, he reflects the work being done by the chairman of the
Exmoor Medical Centre’s patient participation group (see below). He, too,
spends many evenings trying to persuade practices across Somerset (which
has a low proportion of practices with PPGs – perhaps a dozen groups among
about 75 practices) of the efficacy and advantages of patient participation
groups.

The Dulverton Patient Group

The Exmoor Medical Centre in Dulverton has a patient group with a more
formal structure and perhaps a less intimate relationship with its practice
than the one described above.
The practice began the process of developing a patient participation group
some years ago, and held its inaugural meeting in 2003. It was driven by
the senior partner, prompted at least partly by some low scores in patient
surveys. The group was initiated largely through GPs and practice staff
identifying individuals in their patient population. Most people to whom
we spoke approved of this process of ‘cherry picking’ initial leaders,
though opinion was divided as to whether the group should grow naturally
or whether further cherry picking of new members with specific skills is
appropriate. In some more mature groups, individuals who had initially come
forward with complaints had been persuaded to join the PPG.
The chairman of the Dulverton patient group is keen on groups having a
formal structure, although he now suggests that the group spent too long
in its early days considering issues such as mission statements rather than
taking action. Every PPG that we came across was different in structure
and approach. If there was a consistent message about the organisation of
patient groups, it was this:
This is what works for us. It won’t work for everybody – no one size fits all.
PPG member
The Dulverton PPG certainly has a more formal structure than the forum in
Milton Keynes:
You have got to have your own chair, you have got to have your own
secretary, you have got to have control of the agenda, you have got to
write your own minutes. Relying on the surgery to do any of these things
is a disaster – you lose control instantly.
PPG chair

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There may be some very pragmatic reasons for doing it this way:
Practice managers don’t want to do it – they don’t have the time. They are
delighted if it is done elsewhere.
PPG chair
However, it is probably more about ownership:
If the agenda is set by the practice and we are merely invited to say what
ideas we would want on that, that’s not running a patient group – that’s
the practice doing what it wants and allowing you in on the end, almost
under ‘any other business’.
PPG chair
The Exmoor model involves a more distanced relationship between the
practice and group than that of Whaddon House:
They see themselves as a sort of OFSTED.
Practice manager

Sometimes they are frustrated that they can’t be consulted all of the time.
Practice manager
The group is seen as belonging very much to the patient members, who
invite the practice staff and clinicians into their meetings:
It is clearly their meeting, and we are invited – I will be there, and a
partner, usually the senior partner – but it is theirs.
Practice manager
The role of the group is to advocate on behalf of patients (as individuals, as
well as collectively). This is partly in recognition of the fact that some patients
– especially in an extremely rural area where there is no choice of practice –
are unwilling to be critical of their clinicians.
At times, the GPs have let it be known that they felt that the PPG was too
confrontational in its dealings with them. However, the practice manager is
extremely positive about the role and activity of the patient group.
In contrasting style, the forum in Milton Keynes is more relaxed, and has a
looser structure. It feels almost like an open meeting:
We have discussed it at some length, and we have decided not to go down
the chair, treasurer, secretary, fundraiser route. We are a group, and we
are achieving what we want to achieve and will carry on like this.
PPG member
In Milton Keynes, the practice takes responsibility for producing notes.
Meetings appear less formal, and the agenda take the form of a list of
items for discussion that anybody can contribute to. The two-way flow of
information – which seems to be fundamental to a successful patient group –
is less rigid, but seems to work for both parties:
The forum meets about once a month and there is always lively debate.
We don’t always get what we want without a struggle to convince the
partners that it is what the patients want; but this is quite right as what
patients want may not always be practical.
PPG member (Whaddon House Surgery (2010))

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Both groups acknowledge that excellent communications between the group

and the practice are essential:
The main function is that the patient group is a communications hub…
their real task is to establish good relations with the practice.
… You have to be on the inside track.
PPG chair

These are not unreasonable people… we have to have trust in them, we

have to listen to them
Practice manager
There is some sense in which if the communication is good, a great deal of
time can be saved, since messages can be distributed and queries answered
by patient representatives without reference to the practice. This allows
much of the work of the PPG to be done in between meetings. The Dulverton
Group is extremely diligent in ensuring that it has representatives from each
community, and this efficient two-way communication tool is something that
the group and the practice are extremely enthusiastic about:
We just have to update the reps, and it is out there.
Practice manager
Several PPGs to whom we spoke have reflected the National Association for
Patient Participation (NAPP) view that one of the key roles of PPGs has been
to encourage within patients a sense of understanding of the restrictions
within which their practice is operating:
As far as I am concerned, we have broken down all the ‘them and us’
barriers.
PPG member

I tried to show how we do it – how we organise ourselves.

Practice manager

If they can’t do what we want, at least we know the reason, and 99 times
out of 100 it is because of our friends in Westminster!
PPG member
Fostering this sense of common cause seems to be a key component of a
successful relationship between a practice and its patient group:
A lot of this effort is not directed at the practice but at the PCT
PPG chair
A defining characteristic of successful patient groups seems to be an
awareness of the wider health service context within which the practice
operates.
Clearly, much activity is focused on the services provided by the practice,
but both groups see an important role to be acting in concert with patients,
and indeed, with the practice in the wider fields. For example, the Dulverton
Group has supported patients to take up issues with the PCT. Meanwhile,
many members attended planning committee appeal hearings when

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Whaddon House Surgery was attempting to get permission for its new
premises.
These two groups offer different models for way of relating to a constituency
(their methods for communicating with the wider patient population).
Whaddon House relies more on its group membership reflecting their patient
population:
We are quite a representative group.
PPG member
However, its members concede that they would find it beneficial to recruit a
younger member. (There is always a discussion to be had about whether it is
appropriate for PPGs to reflect the majority of general practice users: older
people). The group produces a newsletter, which is distributed in the practice,
and makes use of a suggestion box within the waiting room. The members do
not advertise their contact details, and practice staff direct patients or other
interested parties the group from time to time.
The Exmoor Group has a more formalised network of contacts, with identified
individuals in most if not all the communities covered by this wide-reaching
practice. This provides the patient group with a powerful medium for picking
up messages and for distributing them:
It [the patient group] is meant to receive information from the patient
population; their views, concerns and aspirations as far as the practice is
concerned; and from the practice, the news and changes and so forth back
to the patients.
…The patient group should have as broad a base as possible by age, sex,
ethnicity and in a rural area like ours particularly by geography
…A group is not representing its own views, it is not there to say what it
thinks but what they, the people out there, think
PPG chair
The group communicates internally and externally, largely using email, and
there are plans for the group to have a page on the practice’s website.
The group has expressed some frustration that, because of the issue of
patient confidentiality, it may never know who it is representing. The
confidentiality issue can also prove troublesome when an individual’s
concerns are raised by any patient group members. However, most of the
focus of the patient group’s concerns is on systems.
Both groups believe firmly that they are not there to be ‘talking shops’ or
‘a forum for moaners’. There is some debate among both groups about the
extent to which individual complaints can be taken up (since one patient’s
bad experience may be indicative of a wider problem), and this is obviously a
grey area:
The general view is the most important.
PPG chair
There is also some common ground about the second key role of PPGs – to
help provide services with or alongside the practice. Both groups help out
with organising events that might be described as ‘health improvement
initiatives’.

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In Exmoor, there have been open meetings about issues of importance, such
as the changes in pharmacy regulations, and various initiatives such as well-
man and well-woman events. The PPG has also had a large part to play in
organising the practice’s flu vaccination campaigns each year.
In Milton Keynes, the new premises will allow the patient forum to increase
the number and range of its services, including drop-in sessions for disease-
specific groups. Obviously, services such as this add to the appeal of any
practice, and highlight the practical advantages to practices of supporting
PPGs. It is fair to record the view among some activists that some practices
would like their patient groups to perform this function without playing a
‘critical friend’ role. However, most practices claim to welcome the feedback:
It is almost like mystery shopping for us it – is a secondary source of
feedback.
Practice manager

They provide us with monitoring and a source of feedback as well.

Practice manager

It is what patient groups should be doing – helping GPs understand how

they are viewed.
PPG chair
One area on which these groups agree is that raising funds for the practice
should not be a key (if any) part of the group’s activities:
I do not think that patient participation groups should be involved in
fundraising. It is difficult to say ‘no’, but in principle I do not think patient
groups should fundraise.
PPG chair
This probably sets these groups apart from many PPGs across the country
that see their key role as fundraising (even in the current climate, when
few people feel that GPs are poorly paid). Fundraising is seen as potentially
diverting energies away from the patient group’s more fundamental role as
critical friend.
Furthermore, both groups are cynical about those groups that might be
categorised as ‘friends of the surgery’ or even ‘doctors’ fanclubs’:
We have strong views about ‘friends of the surgery’.
PPG member

Like ladies who do the flowers in the church coming together to worship!
Do they get involved in decisions-making changes in patient care?
Practice manager

They are not a critical patient group – what is their role?

PPG chair

Future developments of patient participation groups

As we have seen, a defining feature of many of the successful PPGs is an

awareness of the wider health-service context. Several interviewees felt that

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while their primary role was, and would remain, to focus on the individual
practices, the key decisions for patient care are being taken at a PBC or PCT
level:
A patient participation group should be part of practice-based
commissioning.
PPG chair
However, there were some concerns that much of the discussion around
commissioning is either too obscure or in fact of no interest to most patients:
A lot of practice-based commissioning means that patients can’t have a
valid point of view.
PPG chair
In addition to playing a role in PBC, many interviewees felt that in order to
have more impact in the future they would need to be working more closely
together, and maybe even grouping together. In some parts of the country,
this co-ordination role is being played by LINks, but these examples are
exceptions rather than the rule.
Groups vary enormously in their origins, structures, relative closeness to
the practice, and conception of their role. This makes it difficult to make
sweeping statements about how effective they are in getting the voice of
patients in to the management and delivery of general practice services. An
effective group needs to have excellent communication and a mutual respect
with the practice.
A good litmus test with regard the extent of patients’ influence is to consider
whether patients would be involved in recruiting a new GP. We came across
one practice where there was full integration with a patients’ panel as part of
the interview process, versus another where patients’ group members had to
look on the practice website to discover the name of the new GP.
The challenge may well be to develop patient groups in a way that allows the
focus to remain on the local, while looking to form alliances or become the
basis for new structures that facilitate meaningful patient involvement in
decision-making at a higher level in changing times for the NHS.
Further information is available at: www.exmoormedicalcentre.co.uk and
www.whaddonhousesurgery.co.uk

Notable practice 2: North Norfolk Patient Partnership

NHS Norfolk (Norfolk PCT) prides itself on its quality of patient and public
involvement. It has a reputation for being one of the leading developers of
PPGs, and its guide How to Set up a PPG was adapted by the Growing Patient
Participation campaign as a model document.
The PCT continues to support and encourage the growth of PPGs within
Norfolk. Of its 92 practices, about half now have recognisable PPGs. It has
also put considerable efforts into helping these bodies exchange information
and build networks. As a result, PPGs are the building blocks of a new way of
working at a PBC level.
The development of practice-based consortia within the PCT area has
thrown up challenges as to how best to include the voice of patients in the

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management and design of general practice services. The area is covered by

nine practice-based commissioning consortia, varying in size and structure.
The North Norfolk Health Consortium PBC cluster covers a swathe of
the north and east of the county from Wells around to Brundle, taking in
Fakenham, Cromer and North Walsham. It comprises 18 practices providing
services for about 150,000 patients living in an area similar to (but not co-
terminous with) the old North Norfolk district.
The North Norfolk Patient Partnership was formed to give patients at the
practices in North Norfolk the chance to get involved with influencing and
designing the future of their local health care.
The partnership brings together patient representatives from each general
practice in North Norfolk. Some practices recruited their patients from their
existing PPG, while those practices that do not have groups already are
looking at forming permanent groups.
In September 2008 56 people, including patients and members of practice
staff (practice managers and GPs), attended an initial event in September
2008. The agenda focused on PBC and the structures and management of
any potential patient reference body. There was a mixture of presentations
and discussion groups – a model that has continued.
The members have decided not to meet more than three times a year,
although they want communication in between meetings. To this end, they
have established a website and a regular newsletter. The group has asked to
consider issues such as:
■■ the Pharmacy White Paper

■■ a GP-led health centre

■■ 24-hour ambulatory ECGs

■■ deep vein thrombosis (DVT) testing

■■ mental health services in North Norfolk.

The membership enjoys taking part, and the PBC has a readily available pool
of people who are engaged in the issues and are willing to contribute. There
is a slight concern that some of the participation and activity is driven by
health professionals (including GPs), but this may change as the organisation
matures.

Notable practice 3: Principia Partners in Health, Nottinghamshire

Rushcliffe, to the south of Nottingham, is becoming recognised as having one

of the most patient-centred health care models in the country.
Principia Partners in Health is a practice-based commissioning cluster
running as a not-for-profit social enterprise (and registered as a company
limited by guarantee) that comprises 16 practices, providing primary health
care for about 120,000 patients across the southern part of Nottinghamshire.
It was formed in 2006 as Rushcliffe Mutual under the then Rushcliffe PCT,
which had a good grounding in patient and public involvement.
Each patient of the constituent practices is automatically a ‘beneficiary’ of
the company, and can seek to become a community (lay) member of the
company. Of the 122 members, 61 are GPs, 40 are community clinician

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(provider) members and 21 are lay members. Any member has a vote at the
annual meeting.
For day-to-day running there is a board of directors, which has 12 members,
of whom six are lay members (community directors), three are GPs (general
practice directors) and three are community clinicians (provider directors).
The chair and vice chair of the board are lay members. This means that there
is constitutionally a built-in majority of lay members on the board.
Under this board are two governance groups: a clinical reference group and a
patient reference group. Each of these is described below.

Clinical reference group and associated task-and-finish groups

The clinical reference group (CRG) is a multi professional forum to provide

clinical leadership to the re-design of care pathways and models of care. The
CRG deals with the ‘technical’ clinical aspects of Principia’s operation. It is
chaired by a GP and consists of:
■■ three general practice representatives

■■ a practice manager

■■ a board representative

■■ three provider (community clinician) representatives

■■ a lay member representative

■■ two members of Principia’s management and admin support.

A lay member of the CRG told us:

It was a hard environment to begin with, but over time I have developed
good working relationships with the member clinicians that have given
me a better insight into some of the difficulties and constraints that they
operate under. My presence on the group ensures that the interests of
the Principia beneficiaries are taken into account when new initiatives are
considered or existing processes are changed.
As the workload of the CRG became clear, including reviewing, designing
and redesigning services, the group used a model of task-and-finish groups.
Again, all of these influential bodies have had a patient membership at their
centre. The core of all task-and-finish groups is composed of a GP, a provider,
and a beneficiary. The core decides on all the processes, procedures and
membership issues that they need to carry out their allotted task:
Within this group I ensured that the patient route through the new
pathway was simple, clear and purposeful, and that the clinicians’ needs
and obligations and the patients’ expectations were in alignment.
Lay member of the clinical reference group
As with the board, the role of patient representation is not to provide any
kind of a veto for the deliberations of clinicians and professionals:
In all cases the lay member is not there to challenge the clinical judgement
of the professionals but to ensure that the patient is always at the centre
of all activities and systems.
Lay member of the clinical reference group

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Figure 3: Principia’s organisation

MEMBERS(Company meets annually)

122 members 61 GPs, 40 provider
members & 21 lay members,

Board
12 members, 6 community directors
(one is chair), 3 GPs, 3 provider
directors

Clinical Reference Patient Reference Group

Group Lay Chair + 8 lay
1 lay member members
2 community directors

PPGs
PBC
practice Principia Rushcliffe PPGs
Forum Task & Health Network
Finish Open membership PPGs
groups Patient groups
stakeholders Individuals
At
least 1
lay
b Older
people’s
health
group Diabetes Cancer
Forum
group
LINk

Source: Our design, based on slides provided by Principia

Patient reference group and associated Principia Rushcliffe Health

Network

The patient reference group (PRG) is the focus for all public and patient
activity within Principia, co-ordinating the detailed involvement of community
members in all aspects of Principia’s operations and their presence on the
various groups and committees that contribute to these operations.
It also has a major role in ensuring that the views of the Principia community
are included in the activities of NHS Nottinghamshire (the county’s primary
care trust). The PRG has cross-membership with the Principia board and

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the CRG, to ensure the development of co-ordinated plans and strategies

across all aspects of Principia’s work. It has essential links with the Principia
Rushcliffe Health Network (see below).
The PRG is chaired by a lay member, and consists of:
■■ the two community directors from the board

■■ eight further community representatives

■■ management and administrative support from Principia and the PCT.

From the beginning, any of the patients or beneficiaries have been

encouraged (but not compelled) to take an active part in the deliberations of
Principia. The organisation has encouraged ‘active beneficiaries’ to:
■■ join their local practice participation group

■■ assist with activities such as publicity, leaflet design and newsletters

■■ join patient forums

■■ receive and respond to questionnaires and consultations

■■ take part in focus groups.

The role of any lay member at each layer of the organisation continues to be
to ensure that a patient’s needs are taken in to account.
During the first two years of operation there was a great deal of discussion
about how eight people can represent a population of 120,000, so the group
developed the Principia Rushcliffe Health Network. This was described as:
… an open membership group to which anybody, any patient of our 16
practices, can belong.
Principia staff member
It is managed in partnership with Rushcliffe Council for Voluntary Services,
because:
They had excellent relationships with a range of voluntary and community
organisations, so they act as a trap door through which we (Principia) can
access all these organisations.
Patient reference group chair
The membership of the network is currently being revitalised. Principia
has shown commitment to this way of working by recruiting more
communications and involvement staff, who will be responsible for updating
and maintaining the database of patients who show an interest, inviting them
to meetings and continuing to communicate with them on a regular basis.
The original membership was recruited through practices, and with a flyer
that was included in a borough council publicity leaflet circulated to every
household in the borough. The general open meetings are augmented by
specialist groups on issues such as diabetes, older people and cancer care.
Any subjects can be tackled apart from individual complaints.
The network provides the board with a standing reference group and a ready
source of specialist knowledge, as well as a pool of individuals from which to
recruit community directors.

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There is no formal link with existing patient participation groups (PPG).

Members of the PRG have offered to support practice PPGs, and there have
been two training sessions where patients and practice managers have
worked together to understand the potential for PPGs. Principia and the PCT
are offering support and incentives to encourage those practices that do not
have PPGs to form them.
The PCT has hosted networking events for members of PPGs from across
the county to come together to learn from each other. Some formal links
may be developed in the future. Similarly, Principia is considering the idea of
locality groups within the network, in order to make the area slightly more
manageable and to match the existing community ward model.
Subjects to be tackled by the network are suggested by the membership, and
have included out-of-hours services, PALS and NHS funding.
The work around out of hours persuaded the PRG that there was a shortfall
of understanding within the community about how best to use services,
and a leaflet was produced and distributed. This sort of feedback persuades
Principia and PCT of the value of patient input:
It gives us some assurance that what we are commissioning is the right
stuff.
Principia staff member
Patient and public engagement is very much in the bloodstream of the
organisation:
Now, nobody here would dream of doing anything without involving
patient representatives.
Patient reference group chair

The structure will develop forever – not throw the thing in the skip and
start again, but the environment changes all the time – it feels like it can
be flexible and withstand change.
Principia staff member
The organisation has gained an impressive profile, both as a social enterprise
pathfinder and one of the 16 Department of Health integrated care pilots,
and is being looked at as a model by other organisations. However, Principia
advises that the model needs to be relevant to local needs, and that it took
time to develop:
It works with us, but use the ideas – don’t try and impose it.
Patient reference group chair
Further details are available at: www.principia.nhs.uk–index.php

Conclusions
Without a solid evidence base, and with limited time, this rapid review
of recent developments was not intended to be comprehensive, and the
conclusions offered are tentative. However, the following themes have
emerged:
■■ LINks are, in the main, struggling to have any impact on patient
involvement in general practice.

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■■ World class commissioning and other central guidance on patient and

public involvement is not specific to practice level, and has had little
impact.

■■ Established involvement techniques used at a practice level have been

about seeking feedback rather than influential involvement, often over
one-off issues. These techniques probably need developing if they are
to involve patients in service delivery and resultant changes.

■■ The most active element of involvement appears to be the

development and support of PPGs.

■■ PPGs are supported by practices as long as the role of ‘friend’ does not
become too critical. The majority of PPGs seem to be in a subservient
role to the practice, providing additional value to the service.

■■ General practice does not have a culture of listening to its users, but
one of the outcomes of the NHS developing choice and competition will
be that involvement – really listening to its customers – will become
more important.

■■ If patient involvement in general practice is to be scaled up, the most

likely means to achieve that is through practice-based commissioning
consortia.

■■ The Department of Health could be encouraged to issue more specific

guidance relating to the involvement of patients and the public.

■■ At least in theory, PCTs working within the world class commissioning

framework should be requiring PPI to be demonstrated as part of the
business case criteria for approval of PBC projects.

■■ At PBC consortium level it is possible to initiate and sustain some

innovative and ambitious mechanisms to involve patients in the
governance of primary care services and the development of proposals
for service change.

■■ Common characteristics in our examples included:

− a history of previous commitment to, and development of, effective PPI

in the local health economy
− the use of networked patient groups as a ground-level source of
participants and consultees for scaled-up involvement in service
development. In some cases this will include PPGs, although Principia
demonstrates the alternative approach: recruiting a new health
network, using other available channels
− a willingness of the PCT to enable these developments, and to support
the growth of PPGs or other local health networks.
■■ Sustaining scaled-up involvement requires resources and support from
various local stakeholders, as well as the practices themselves. These
resources will need to include communications and administrative
support.

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3 Discussion: the challenges of engagement and

involvement in primary care

In response to an earlier version of this document, our peer reviewers

suggested that we should reflect on the challenges for primary care
practitioners who may seek to engage patients more closely in their care and
treatment or to involve patients in the development of services.
This subject goes beyond our original brief, and we believe it is more
important to understand those challenges from the perspective of GPs and
other primary care staff themselves. Nevertheless, drawing both on the
research described above, and on the general experience of Picker Institute
Europe, we offer the following notes for discussion.

The challenges of engaging patients in their care

Reviews of professional codes, legislation and regulation in the last four years
have brought patient engagement to the fore as a duty and a requirement for
all doctors, and all who provide NHS services.
Over the past decade, professional education and training has been revised
to highlight the need to work in partnership with patients, and to equip
doctors, in particular, with skills and competences so to do. The main focus
has been on communication skills training – particularly in relation to careful
listening, delivering unwelcome news, and explaining risks and benefits of
treatment.
As a working hypothesis, it seems reasonable to assume that these
developments are somehow correlated to the general improvements that
patients have reported, via the national surveys, in communication within the
consultation.
However, it remains the case that significant minorities of patients have a less
positive experience of consultations. It is also clear that the improvements in
communication have not led directly to a corresponding improvement in the
proportion of patients who say they are as involved in decisions about their
care and treatment as they want to be.1 Just under one-third of primary care
patients want more involvement, little changed from 2003.
The key challenges are set out below.

Workforce skills

A first possible reason for this disconnect is that patient partnership skills are
more likely to be developed in the generation of primary care practitioners
trained during the past decade. They are less likely to have senior roles in
practice, and the effects of practice and behaviour modelled for them by
more experienced or senior practitioners may reduce their enthusiasm for
patient partnership or their ability to practice it successfully.

1 A more detailed discussion of these trends, with referenced to the survey data and
to variation between age and ethnic groups, is available in Picker Institute Europe’s
submission to the review of Tomorrow’s Doctors: www.pickereurope.org/Filestore/
Policy/consultations/Tomorrows_Doctors_Picker_Institute_response_March09.pdf

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A second possible reason for the disconnect is that, even where

health professionals are trained in, or have a natural facility for, better
communication, their skill set may not yet be sufficiently broad. For example,
listening carefully to what a patient has the courage to say is not the same
as being skilled in eliciting from the patient the values and preferences that
may affect whether or not they wish to take up, or adhere to, a treatment
choice. Likewise, explaining risks and benefits is valuable, but alongside this
needs to go an assessment of the patient’s capacity and willingness to take
an active share in the decision.
Therefore, the skills of eliciting and understanding the patient’s side of the
information picture, and of determining the extent to which they wish to, or
able to, be ‘activated’ patients, need to come into focus.

Practice orientation

These discussions also link to another possible factor in the equation – that
high-quality patient engagement is most likely to develop where there is a
high awareness of its value, and a conscious philosophy or practice mentality
that encourages members of a team (such as the health professionals in a
primary care practice) to focus on its achievement.
Again, this may be less likely where the senior partners do not bring a
patient-partnership approach to the fore. Arguably, it is also less likely
to develop where the priorities of the practice or team are focused
overwhelmingly elsewhere – for example, on process targets or financial
incentives. As discussed in earlier sections, there are currently no identifiable
financial incentives or NHS targets that are focused on engaging patients
better in their consultations. It remains to be seen whether regulatory
incentives, related to CQC registration or medical revalidation, have any
measurable effect on practice in this area.

Health literacy

A third challenge for health care professionals is that of patients’ health

literacy. This refers not just to reading and understanding health information
but to the patient’s ability to make use of health information and apply it to
choices and decisions. This is a known barrier to engagement.
Health literacy is very strongly associated with health inequalities. People
with low health literacy tend to:
have poorer health status
■■ undergo more hospital admissions

■■ be less likely to adhere to treatment recommendations

■■ experience more drug and treatment errors

■■ make less use of preventive services (Institute of Medicine 2004).

In the United Kingdom a study reported that 11 per cent of adults have
marginal or inadequate health literacy.
Most strategies to tackle this problem have involved redesigning patient
information materials and provision. Evidence (Picker Institute Europe

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2010b) shows that this can be effective in increasing patients’ knowledge and
understanding, where:
■■ the information is tailored and personalised

■■ the information is personally delivered by a health professional who

can answer questions and add explanations

■■ patients are supported to make better use of their health service

through innovations such as question prompts for consultations,
telephone reminders to attend appointments, and various forms of
targeted telehealth provision.

The evidence that innovation in service design can better enable patients to
make use of services is important, suggesting that the health service needs
to adjust to patients’ health literacy levels, rather than (for example) blaming
patients for missing appointments or failing to adhere to medication.

Patient expectations

A further challenge lies in the expectations that patients themselves bring to

the consultation. Although some doctors have a fear of patients becoming
ever more demanding ‘consumers’, most research among patient groups
suggests the continuation of a mindset of gratitude and not wanting to be a
‘nuisance’. This is especially the case with regard to older people with long-
term conditions – the bulk of the primary practice caseload (see forthcoming
research by Picker Institute Europe for the NHS Service and Delivery
Organisation on the beliefs and experiences of this patient segment).

Time factor

Much of this points us back to one of the factors identified in our review,
by GPs and patients alike, as working for or against the success of the
consultation: the length of the consultation available. To go beyond current
average standards of patient engagement implies increasing the length of
consultations to allow the health professional time to elicit full information
from the patient, assess their willingness and capacity to participate in
decisions, explain the clinical aspects and the treatment options in full, and
explore with the patient whether they have understood all of this, and how
they would like to proceed.
Primary health care professionals are likely to respond that this is unrealistic
– and for one-off, minor or acute and non-recurring episodes this may be
true.
However, there is a clear danger that unless there is a conscious effort to
provide a more extended consultation at some point, people with long-term
or recurrent conditions may go through many primary care appointments
– plus visits to outpatients, and possibly to A&E and inpatients. Much of
this activity could be reduced if primary care professionals worked with
these patients in more depth to develop a coherent care and treatment
plan that met their needs and accorded with their values, preferences
and life circumstances, to begin a more proactive process of enabling and
empowering the patient to manage their own condition.
Hence proactive care-planning approaches and high-quality patient
engagement are intimately linked.

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Fragmented pathways

The issue of incentives, mentioned above, leads to a further challenge.

We have seen that better patient engagement can lead to better use of
health service resources – for example, by avoiding unnecessary hospital
admissions. Primary care practitioners may ‘know’ that this makes sense,
but the system they are currently working in does not encourage joined-up
thinking.
In an acute or specialist setting, it is possible to trial patient engagement
approaches and to test, in one setting, the impact on service usage. This
has been done, for example, at the National Refractory Angina Centre
in Liverpool, where referred patients now undergo extensive initial
consultations and courses of education before deciding their preferred
treatment (Picker Institute Europe 2010a)
In primary care, since the diagnosis, assessment and consultations on
specific conditions are very often carried out through referral to an acute or
specialist setting, ‘ownership’ of the patient-professional partnership may in
fact be delegated to the specialist physician or nurse.
GPs do not control the decision-making process. Nor do they control the
resources required along the chain of referral. As some have commented,
GPs are ‘spot buyers’ of care and treatment.

The challenges of measuring patient engagement

As we have seen, for quality monitoring and improvement purposes, patient
engagement is best measured through patients’ reports of their experiences.
There are well developed instruments for this, designed for various purposes,
including:
■■ national comparative surveys

■■ the appraisal of candidates for qualification

■■ the appraisal of practising GPs (and therefore for revalidation)

■■ performance-management reward structures.

In Section 1 of the report we discussed aspects of measurement. We have

also supplied the inquiry with indicator templates with suggested measures.
■■ In this short section we briefly note some of the challenges of
measuring engagement from the perspective of the primary health
care practice. Methodological challenges for example, securing
sufficiently large samples of patients, knowing whether these are
representative, and avoiding bias in the responses (for example, where
surveys are completed on the premises or with the ‘help’ of a member
of staff)

■■ ‘Purpose challenges what to use the results for and how to use them

■■ ‘Comparability challenges surveys conducted by a single practice or

health centre do not allow for benchmarking against others, practices
resent imposed systems of scoring or comparison – such as those
associated with the GPPS

■■ Incentivisation challenges primary health care practitioners tend

to distrust systems that tie incentives into patient-experience results,

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and to question the methods and thresholds used. Where incentives

are tied to loose targets, as was initially the case with the QOF (with
reward points being earned simply for carrying out a survey, not for
the scored results or the improvement actions taken), there is a risk
that measurement will happen for the sake of measurement. However,
where incentives are tied to specific scored results (as with the GPPS),
practices may rebel against any perceived unfairness – especially
where their income is threatened.

Together, these challenges point to the need for a debate within primary
health care about how best to use patient experience measurement to raise
the quality of care – including the quality of engagement.
Some form of self-owned (and therefore self-regulatory) system might
seem most compatible with the ‘small business’ model of general practice
provision, but a genuine commitment to delivering high-quality patient
engagement would need to be guaranteed throughout the service – and the
comparability question would still remain.
As a last note, we would suggest there may be similarities here with
the challenges of patient involvement – that is, that if primary health
practitioners want an alternative to centrally imposed targets and measures,
this may need to be scaled up through practice-based commissioning.
Clearly, where a PBC consortium or cluster is achieving a scale of six-figure
patient coverage, and has central administrative resources available, it
becomes easier to overcome some of the methodological and comparability
challenges.

The challenges of involving patients in service development

The challenges of involving patients and the public in how services are
developed and governed are similar within primary care as in other health
care settings. No area of health policy and practice has been so plagued by
confusion, lack of robust research and the absence of common frameworks of
practice, and of monitoring and assessment.
Primary care does have two distinct advantages over other care settings:
that it is close to the community, and that practices have a registered
population with which to work. In one of our examples of notable practice
(that of Principia, in Nottingham), this registered population is treated as
the membership of a company. But at the practice or health centre level,
relatively small teams with full workloads and limited backroom resources
are managing the health needs of a relatively high number of people. This
puts a question mark over the possible scale and ambition of involvement
initiatives, and their sustainability.
Not surprisingly, in all three of our notable examples achievements in
involvement took years to establish themselves and evolve. There are
countless other examples of involvement initiatives, started by one or two
enthusiastic partners in a practice, that have withered and died within a short
space of time.
Sustainability is also difficult to maintain where there is little in the way of
policy, guidance or established models for start-up initiatives to make use
of. One of our examples, Whaddon House surgery, clearly had a sense of
‘making it up as they went along’ in the early years. NAPP’s resources and

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the Growing Patient Participation campaign are designed to overcome some

of these deficits, and may help pave the way for more evolved models of the
PPG.
However, as our report notes elsewhere, for all the national policy
concentration on patient and public engagement and involvement, there are
very few initiatives that have been developed from the centre specifically for
primary care – whether in policy, legislation or regulation.
Our examination of notable practice examples identified one very important
ingredient in scaling up and sustaining activity: the active support and
promotion of involvement in primary care by the primary care trust. It is
our suspicion – supported to some degree by our surveys of PCTs – that
these examples are innovative, and that the majority of PCTs may not be so
engaqed.
Picker Institute Europe has produced various forms of guidance and advice
relating to patient and public engagement (see, for example, Picker Institute
Europe 2009, Picker Institute Europe 2008a) These emphasise the need to:
■■ clearly differentiate between patient engagement in care and patient
involvement in service design and development

■■ be resolutely clear about aims and objectives – spending time up front

to refine these

■■ adopt a single clear objective for each project, where possible. For
example, if you are considering starting a forum or participation
group, do you want it principally to fundraise, to enhance your
service, to collect feedback from a wider population, or to assist in the
development or governance of the practice? Don’t confuse the various
roles or ask it to do too many things

■■ avoid reinventing the wheel – research all available guidance, and find
out what people are already doing, or have already found out, in your
area or elsewhere

■■ choose methods of research among patients, or of organisations of

participation, that suit the chosen objectives – and get guidance on
that if possible

■■ ensure that the resources are available to support and sustain the
activity

■■ monitor and review success in meeting the objectives over time.

Picker Institute Europe has also made the argument in various places,
including its submission to the NHS Next Stage Review (Picker Institute
Europe 2008b that the Department of Health should invest in:
■■ developing and disseminating a coherent framework for measuring and
evaluating the effectiveness of local patient and public involvement
work

■■ commissioning research to identify effective strategies for engaging

patients and local people in service design.

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4 Discussion and suggestions

The original aim of this report was to provide the inquiry with a review of
evidence and practice in relation to patient engagement and involvement in
primary care.
During the process of the work we were encouraged – not least by peer-
review comments – to develop recommendations for the panel to consider.
We still believe that this goes beyond our initial brief, and we feel constrained
by the fact that Picker Institute Europe is not a specialist institute for the
study of primary care, nor is it part of the general practice professional
networks. Our view is that primary care professionals need to take the lead
in developing new and innovative approaches to patient engagement and
involvement.
We would therefore prefer to characterise what follows as suggestions,
rather than recommendations, which may have some value in helping further
discussions both within the inquiry and among the professions themselves.

Patient engagement
The key domains of patient engagement outlined in our report are now a
matter of consensus at the higher policy levels – that is, at the Department
of Health, the Care Quality Commission and the General Medical Council, and
within the Royal College of General Practitioners.
What is required now is to close the gaps, where they exist, between policy
regulation and mainstream primary care practice.
The Department of Health has driven various strategies that touch on patient
engagement (patient choice, information prescriptions, support to self-
management education and so on) but has not found the key to unlock a
determined drive towards full patient engagement in primary care.
Arguably, this could be due to the following factors:
■■ that the conduct of consultations and care planning lie within the
professional, rather than the policy domain, and are not amenable to
the pulling of central policy levers

■■ that the overwhelming political focus on primary care has been on the
question of access, at the expense of considering what happens to
patients once they come through the door

■■ that policy-makers have underestimated the importance and value of

shared decision-making.

A comparison to NHS Scotland may be useful. In its new strategy for quality
the Scottish government has more strongly identified as one of its three
‘quality ambitions’ the achievement of ‘mutually beneficial partnerships
between patients, their families and those delivering health care services
which respect individual needs and values and which demonstrate
compassion, continuity, clear communication and shared decision-making.
(The Scottish Government 2010).
To achieve this ambition, it has identified specific interventions including:
■■ a self-management strategy

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■■ use of patient experience and patient-reported outcome measures

■■ defining, supporting and measuring shared decision-making

■■ implementing the consultation and relational empathy (CARE) measure

(see University of Glasgow 2010). better resources to improve health
literacy.

This person-centred domain of quality is a more comprehensive and more

specific package than the patient experience domain in the NHS Next Stage
Review formulation in England, and progress its should be watched carefully.
We suggest that primary care professional leaders in England should now
be making a concerted approach to the new United Kingdom coalition
government to identify a similar comprehensive strategy, putting shared
decision-making at its heart, together with the various interventions required
to help achieve it, namely:
■■ health literacy strategy

■■ self-management strategy

■■ universal patient access to medical records

■■ approaches to measuring patient-reported experience and outcomes

that serve the purpose of improving the levels and quality of patient
engagement.

We note that the coalition’s programme for government includes a pledge to

‘put patients in charge of making decisions about their care, including control
of their health records’. There is as yet no detail, but this is an opening that
the professions themselves, allied with patient and service user groups,
should now seize.
Our report notes that there is no shortage of potential measures for patients’
experience of the key domains of engagement, but the difficult questions are
those around the purposes and usage of measurement, and therefore the
choice of instruments. A concerted NHS England strategy for engagement
would help to clarify these choices and trigger a review of quality
measurement strategies.
Our final suggestion is that, given the consensus between patients and
GPs (and across the policy and regulatory areas) on the key domains
of engagement, any future systems of measurement should attempt to
use common questions and indicators. This is the case even where these
questions and indicators serve various purposes, and they should always
be linked back to the ‘patient partnership’ duty in Good Medical Practice
(General Medical Council 2006)..

Patient involvement
The Department of Health should consider producing a clear framework
to define good practice in patient involvement, and to help monitor and
evaluate patient involvement programmes and interventions. It should do
this in partnership with the CQC, which will be able to use this information
when assessing registration requirements.
At the top level, this framework should be generic for all health and social
care providers. However, we have identified an absence of specific guidance

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and resources for primary care, and these should be developed at the
secondary level. (We note that there have been some moves in this direction
in the Department’s recent strategy work on primary care access.)
Primary care professionals and practices who are considering involving their
patients in service development or governance currently find it difficult to
identify ‘what good looks like’, including common indicators that would show
whether involvement was being achieved.
There is a low base of evidence and practice examples to start with here, and
so this is an area that should be prioritised by primary care organisations.
We suggest a need for a ‘big conversation’ generated by the primary care
sector itself and involving organisations such as the NHS Alliance, the RCGP
and the Clinical Leaders Network. Patient and service-user groups such as
the National Voices coalition, Picker Institute Europe and condition-specific
charities with active user-representative groups would be willing to play a
role in these developments.
Finally, our observations on the potential to scale up involvement through
PBC clusters and consortia may seem to have limited usefulness at a time
when many commentators are considering PBC to have been unsuccessful.
However, the direction of travel of the coalition government points strongly
towards further development of, and delegation of commissioning to, the PBC
level. Primary care professionals and their organisations should be ready to
engage in positive dialogue with the Department of Health on the integration
of patient and service-user involvement with any forthcoming new PBC
strategies and plans.

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Appendix A: The review of qualitative studies of

engagement

This appendix describes our review of qualitative studies exploring GPs’

and patients’ perceptions of patient engagement within general practice
consultations.
To explore patients’ engagement as partners in their own health care within
general practice, we undertook the following pieces of work:
■■ a review of qualitative literature exploring GPs’ and patients’
perceptions of the factors facilitating patients’ engagement as partners
in their health care within general practice

■■ a review of existing measures of patients’ engagement in their health

care within general practice.

Aim

To explore what are the key dimensions of facilitating patients’ engagement

as partners in their health care within general practice, from the perspectives
of general practice professionals and patients alike.

Research question

What are the key dimensions of facilitating patients’ engagement as partners

in their health care within general practice, from the perspectives of general
practice professionals and patients alike?

Method

Design

The study is a survey of primary empirical research employing a systematic

review method.

Identifying studies for inclusion

The inclusion and exclusion criteria were designed to answer the review
question and were defined by the population, study design, interventions
and outcomes of the studies that were included in the review. The criteria
were piloted. Search terms were entered into the electronic databases and
retrieved articles were briefly reviewed to check that they could reliably
identify studies of interest. As the extraction process of relevant papers
developed, the exclusion criteria were developed and modified to increase
the sensitivity of the search.
Studies meeting all of the inclusion and none of the exclusion criteria were
included in the review.

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Table A1: Inclusion and exclusion criteria

Inclusion criteria Exclusion criteria

An adult population Studies measuring factors facilitating patient engagement that
employed quantitative measures
Studies employing a qualitative methodology Studies including an observational design including case series,
case control, cohort studies, editorials and book chapters
Studies conducted in a primary care setting
Studies exploring factors facilitating patient involvement
Studies including a sample containing patients and/or doctor
and/or nurses
Papers written in English

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Developing the search strategy

AW developed a search strategy to identify qualitative studies identifying

factors facilitating patient engagement in primary care. The search strategy
was developed with reference to the review aims, CRD (2001) guidelines,
keywords of target articles, and discussions with the research team to
identify articles from social science and psychological electronic databases
and the grey literature. The search strategies included the following terms:
■■ patient involvement OR patient partnership OR patient communication
OR patient centredness OR patient engagement OR patient
expectations

■■ AND

■■ primary care

■■ AND

■■ patients OR doctors OR family practitioners OR nurses (terms defining

the population were only included in the PubMed database search).

Data extraction

Articles were identified from: electronic databases (PsychInfo, PubMed,

ASSIA, EMBASE and CINHAL), searching reference lists of all articles
included in the review and prior reviews of similar literature. References were
managed using Endnote computer software to remove duplicate articles and
to manage the retrieved references. A data elicitation chart was developed
and applied systematically to all articles included in the review. AW read all
of the abstracts to see ascertain if they met the inclusion criteria. Full text
articles meeting the inclusion criteria were retrieved.

Search results

Psycinfo

Patient involvement OR patient partnership OR patient communication OR

patient centredness OR patient engagement OR patient expectations AND
primary care =1818.

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EMBASE

Patient involvement OR patient partnership OR patient communication OR

patient centredness OR patient engagement OR patient expectations AND
primary care =303.

CINHAL

Patient involvement OR patient partnership OR patient communication OR

patient centredness OR patient engagement OR patient expectations AND
primary care =385.

ASSIA

Patient involvement OR patient partnership OR patient expectations OR

patient engagement AND primary care =187.

PubMed

Search ’1994’ [publication date]: ’3000’ [publication date] AND patient

partnership OR patient involvement OR patient communication OR patient
centredness OR patient engagement OR patient expectations OR patient
priorities AND primary care. Limits: humans, English, all adult: 19+ years = 1011.

Findings

Our search identified eight papers that focused specifically on patient and/or
GP views of factors that might contribute to patient involvement in primary
care.

Study characteristics

Five studies were conducted in the United Kingdom, one in the United States
and two in 11 different European countries. An equal number of studies were
conducted with samples containing all patients (n=3) or GPs (n=3 – see
Table A1). Between 11 and 233 GPs were included in the latter studies and
between 16 and 406 patients were included in those studies containing a
patient sample (see Table A2). Some studies referred to specific populations.
For example, studies focused on:
■■ patients with chronic illness (Campbell et al 2007; Blakeman et al
2006)

■■ shared decision-making (Edwards et al 2001)

■■ mental health (Lester et al 2006)

■■ older adults (Bastiaens et al 2007).

Three studies interested in GPs views on patient involvement did not focus
on a specific population. Five studies employed semi-structured qualitative
interviews and three studies employed focus groups to explore participants’
views. All used thematic analysis to develop and apply a coding frame to each
transcript and eliciting themes from the data. One study was theory driven,
and used Howie’s theoretical model for understanding general practice
consultations to structure the findings (Blakeman et al 2006).

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Table A2: Type of participants included in studies for the review

Type of participant Studies

GPs Blakeman et al (2006)
Talen et al (2008)
Wetzels et al (2004)
Patients Bastiaens et al (2007)
Campbell et al (2007)
Edwards et al (2001)
GPs and practice nurses Lester et al (2006)

GPs, hospital doctors, practice nurses, academics, lay people Ford et al (2003)

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 Table A3: Summary of data extracted from each paper

Author and year Aim of research Participants Data collection and Factors identified by patients and doctors
analysis

Bastiaens et al (2007) Views of people over 406 people between 70 Qualitative interview – 1. Patient involvement (meaning)
70 in involvement in and 96 years of age coding scheme • Doctor–patient interaction
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primary care in 11 developed and applied • Responsibility of the GP

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European countries to transcripts to elicit • Responsibility of the patient (informs GP, follows advice)
themes • Contextual factors
2. Barriers
• Doctor–patient interaction
• Patient-related barriers
• Mental status (understanding, forgetfulness)
• Low education
• Personal characteristics (for example, not feeling equal, not
being able to express themselves, anxiety of serious disease or
examinations)
• Contextual barriers
3. Facilitators
• Doctor–patient interaction
• Patient-related facilitators
• GP-related facilitators
• Contextual facilitators
Blakeman et al (2006) To explore GPs’ 16 GPs in 2 primary care Semi-structured Central theme to emerge was conflict between different values,
perspectives on their trusts interviews, open coding and between values and context – although increasing patient
involvement in the using Howie’s theoretical involvement and control of health was valued, it was not necessarily
facilitation of chronic model of understanding prioritised – it clashes with other important values of professional
disease self-management GP consultations to responsibility and accountability, as well as with contextual factors
structure the analysis that drive GP behaviour (for example, consultation length)
and themes
 Author and year Aim of research Participants Data collection and Factors identified by patients and doctors
analysis
Campbell et al (2007) To identify which aspects 44–182 questionnaires Questionnaires and Six key themes in quality deficit:
of quality are important returned. 16–26 patients interviews, analysed using 1. The health care system provides a generic ‘one size fits all’ service
to patients with common from four practices in the thematic analysis that is incompatible with an individual patient’s experience
chronic mild-to-moderate North of England took part 2. Patients with mild-to-moderate mental health problems often have
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mental health problems, in interview feelings of powerlessness and of being ‘lost’ in a system that is

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and how to involve patients more responsive to severe and acute episodes of illness than to
with chronic mental health chronic morbidity
problems 3. Patients often have unmet needs in relation to the distress of
living with mild-to-moderate mental health problems
4. Quality deficits in primary care for people with mild-to-moderate
chronic mental health problems
5. GPs are rated highly, and the attributes of a good GP can be
identified
6. Engaging with chronic mental health problems in the research–
policy process requires generic assessment
7. Quality of mixed methods
 Author and year Aim of research Participants Data collection and analysis Factors identified by patients and doctors

Edwards et al (2001) To identify the important 47 participants 6 focus groups 8. Context of discussions in the consultation:
outcomes of consultations 3 general practice based 9. a sequence of consultations
for patients and compare 2 consumer groups 10. continuity with same professional
with those reported in the 1 group ‘patient simulators’ 11. respect for individual consumer
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literature 12. variable involvement according to context

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Emergent themes identified and Process of discussions in the consultation:
discussed with research team 1. individual contribution to discussions
2. perceived involvement in decisions
3. perceived professional-consumer agreement
4. satisfaction with the way a decision is made
5. and sufficient time to decide
6. certainty that best decision made
7. opportunity to involve others
Content of discussions in the consultation:
• options and choices specified
• information provision
• support materials
• review arrangements
• Health outcomes:
• anxiety/reassurance
Ford et al (2003) To identify GPs (n= 11), hospital Semi-structured interviews • Doctor–patient relationship: trust, respect, honesty and partnership
the elements and skills doctors (n=10), practice analysed using the constant building
required for a successful nurses comparison method • Patient’s perspective: related mostly to exploring patients’
EBPC (n=5), academics (n=11) individual qualities and circumstances
Consultation to occur and lay people (n=8) • Research evidence–medical information – for example, access to
and knowledge of the evidence
• Time issues
• Decision-making process
• Establishing nature of the problem
Author and year Aim of research Participants Data collection and analysis Factors identified by patients and doctors
 Lester et al (2006) To describe types of 45 patients with serious 18 focus groups in 6 primary care • the value of lived experience
patient involvement in mental illness, 39 GPs, 8 trusts: six patient, six health • decision-making in the consultation
primary care from primary practice nurses professional and six combined • the importance of paid work.
care health professionals focus groups analysed by coding
and patients with serious transcripts and developing
mental illness themes
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Talen et al (2008) To identify what 41 GPs 5 focus groups transcripts 12. Patient knowledge – health and family health history, knowledge

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makes good patient reviewed for general themes and of diagnosis and/or condition
communication broad categories 13. Patient skills – preparation and articulation
14. Patient attitude – responsibility of own condition, trust, honesty

Wetzels et al (2004) Aim: to describe GPs 233 GPs in 11 European Semi-structured interviews 1. Barriers to involvement – GP lack of time, patient feelings of
views of factors of countries analysed using a coding frame to respect and lack of experience in being involved and possible
involvement in 11 build themes mental and physical impairments
European countries
2. Facilitators – more or other resources, better prepared patients
and informed patients, GPs using communication skills

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Appendix B: Existing measures of patients

engagement

This appendix describes our review of existing measures of patient

engagement.

Aim
To explore, identify and critically appraise existing measures of patient
engagement in their health care within general practice.

Method
We identified and examined existing measurement tools, questionnaires and
scales used to measure patient engagement in their general practice care.
We identified tools by searching the following bibliographic databases:
PubMed, CINHAL, Science Citation Index and Social Science Citation Index,
and by examining existing surveys of patient experience of general practice
and primary care (including those undertaken by the Department of Health,
the Healthcare Commission and Ipsos Mori). We also searched the NHS
Information Centre, the Question Bank hosted by Surrey University, the Data
Archive at Essex University, and the Office for National Statistics Surveys.
When we had identified the existing measures and questions, we examined
each measure by:
■■ identifying the aspects of engagement covered by the measure

■■ the method and setting of question administration – for example,

postal, face to face, home based or at the GP surgery.

We then analysed the extracted measures and scales, to identify the domains
that they measured. Finally, we tabulated the measures against the domains
of engagement identified.

Development of search strategy

SP developed a search strategy to identify existing measures of patient
engagement in their general practice care. The search strategy was
developed with reference to the review aims, keywords of target articles and
discussions with the research team to identify articles from social science
and psychological electronic databases and the grey literature. The search
strategy included the following terms:
■■ quality OR quality of care OR consultation quality OR quality indicators
OR quality judgements

■■ AND

■■ primary care OR general practice OR family practice

■■ AND

■■ patient involvement OR patient expectations OR patient centredness

OR patient priorities OR patient satisfaction OR public involvement OR
user involvement

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■■ AND

■■ measures OR scales OR instruments OR process measures OR outcome

measures.

Data extraction
Relevant articles were identified from Google scholar and the following
bibliographic databases: PsychInfo, PubMed, Science citation index and
Social Science Citation Index. References were managed using Reference
Manager Software, which enabled duplicate references to be removed. SP
read all the abstracts to ascertain if they met the inclusion criteria. Full text
articles meeting the inclusion criteria were retrieved.
The key domains that the tools and scales measured were identified and the
identified tools and scales tabulated under the key domains.

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 Table B1: Domains, tools and scales for measuring patient engagement

Title and Authors Aims Data collection and analysis Questionnaire items or indicators

‘The consultation and relational empathy To develop a process measure Provides doctors with direct feedback of their relational empathy
measure: development and preliminary based on a broad definition of as perceived by patients.
validation and reliability of an empathy based empathy for the evaluation of the How was the doctor at …
consultation process measure’ (Mercer 2004) quality of consultations in terms 1. Making you feel at ease
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of the ‘human’ aspects of medical 2. Letting you tell your story

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care 3. Really listening
4. Being interested in you as a whole person
5. Fully understanding your concerns
6. Showing care and compassion
7. Being positive
8. Explaining things clearly
9. Helping you to take control
10. Making a plan of action with you

‘Identifying predictors of high quality care in To generate a set of face valid Wrote to all district primary care Domains of quality identified:
English general practice: observational study’ indicators for quality of general lead in England and Wales, asking 1. Access
(Campbell et al 2001) practice and place them in the for details of indicators which they 2. Organisational performance
public domain for discussion were using or considering using in 3. Preventive care
primary care 4. Chronic disease management
5. Prescribing
6. Gatekeeping

Very few indicators were focused on the quality of the

consultation from the patient’s perspective, although the study
was undertaken in 1996

Useful indicators representing the patients’ perspective were:

Adequate patient information should be available in a suitable
format for patient self-management of diabetes
 Title and Authors Aims Data collection and analysis Questionnaire items or indicators

‘Shared decision making: developing To enable accurate assessments OPTION scale – item-based Features of quality shared decision-making:
the OPTION scale for measuring patient of the levels of involvement in instrument completed by raters who 1. Problem definition (and agreement)
involvement’ (Elwyn et al 2003) shared decision-making achieved assess recordings of consultations. 2. Explaining that legitimate choices exist in many clinical
within consultations to provide It has been developed to evaluate situations, professional ‘equipoise’
research data for empirical shared decision-making specifically 3. Portraying options and communicating risk about a
GP Inquiry Paper

studies in this area in the context of general practice. wide range of issues – for example, entry to screening

79 The King’s Fund 2010

It examines whether problems are programmes
well defined, options are formulated, 4. Conducting the decision process or its deferment
information provided, patient
understanding and role preference The accomplishment of these competencies form the conceptual
evaluated and decisions examined basis for the OPTION scale
from both professional and patient 1. The clinician identifies a problem needing a decision-making
perspectives process
2. The clinician states that there is more than one way to deal
with an identified problem
3. The clinician lists options including the choice of ‘no action’ if
feasible
4. The clinician explains the pros and cons of options to the
patient
5. The clinician checks the patient’s preferred information format
6. The clinician explores the patient’s expectations about how
the problems are to be managed
7. The clinician explores the patient’s concerns about how
problems are to be managed
8. The clinician checks that the patient has understood the
information
9. The clinician provides opportunities for the patient to ask
questions
10. The clinician asks for the patients’ preferred level of
involvement in decision-making
11. An opportunity for deferring a decision is provided
12. Arrangements are made to review the decision (or the
deferment
 Title and Authors Aims Data collection and analysis Questionnaire items or indicators

‘Quality of care from the patients’ Sixma developed QUOTE General indicators – process
perspective: from theoretical concept to a instruments in which quality of Health care providers should:
new measuring instrument’ (Sixma et al care aspects were formulated 1. Know my problems very well
1998) as importance and performance 2. Work efficiently
statements. Importance was 3. Allow me to decide on which help to get
GP Inquiry Paper

assessed without specifying 4. Take me seriously

80 The King’s Fund 2010

professions or type of 5. Keep their appointments punctually
organisation. Performance 6. Allow me to see my patient notes
judgements referred to contact 7. Allow me to choose another professional
with GPs and other health 8. Give information on combinations of medicines
professionals
Category-specific indicators
1. GP allows me to tell my story
2. Tells his findings in follow-up consultations
3. Be able to look at things through my eyes
4. Pay attention to the psycho-social aspects of my illness
5. Should be within easy reach
6. Be willing to learn about patients’ problems
7. Allow me to manage my own budget for care

Regional indicators
1. Listen to me very carefully
2. Display information leaflets in their waiting room
3. Show understanding for contacts with alternative medicine
 Title and Authors Aims Data collection and analysis Questionnaire items or indicators

‘Patient expectations: what do primary care Study aimed to report on the Patient intentions questionnaire Explanation of problem items from PIQ:
patients want from the GP and how far types of needs of adult primary (PIQ) used to measure patients’ 1. Is problem related to other parts of life?
does meeting expectations affect patient care attendees. Second aim expectations. This consists of 42 2. Want to know why feeling this way
satisfaction?’ (Williams et al 1995) was to investigate whether statements about what they want 3. Want GP to explain treatment
meeting patients’ expectations from the GP during a given visit. 4. Want to be examined for cause
GP Inquiry Paper

by GPs leads to greater reported The PIQ was used to create the 5. Want GP to understand patients’ view

81 The King’s Fund 2010

satisfaction in primary care expectations met questionnaire 6. Want to know how serious problem is
patients. Third aim was to see (EMQ), which consists of the 7. Want to know course of problem
what percentage of patients same 42 PIQ statements about 8. Will I have problems in future?
reported their expectations not what they received from the GP 9. Want to know how long until recovery
being met, and in which areas during the given visit. The medical 10. Want to be sure nothing is wrong
interview satisfaction scale (MISS) 11. Want to know what symptoms mean
was selected to measure patient 12. Want GP to talk about problem
satisfaction with the consultation, 13. Want help with medical problem
since it is one of few consultation- 14. Want GP to explain what is wrong
specific measures 15. Want GP to understand problem

Most frequent expectation was for the GP to understand the

problem followed by for the GP to explain what is wrong with
them.
Support items:
1. Want advice on a marital problem
2. Want help with emotional problems
3. Want emotional problems explained
4. Want treatment for nervous condition
5. Want to receive comfort
6. Told about others with the same problem
7. Want to discuss certain life problems
8. Want support with problem
9. Feeling anxious and wanting GP’s help
10. Want to know why reacting this way
11. Want to talk about own feelings

The most frequently wanted support items were to talk about

their own feelings during the consultation
 Title and Authors Aims Data collection and analysis Questionnaire items or indicators

Test and diagnosis items

1. Want to be referred to a specialist
2. Want advice on a drug I am taking
3. Want a previous diagnosis confirmed
4. Want GP to explain test results
GP Inquiry Paper

5. Want some test results

82 The King’s Fund 2010

6. Want to know if problems are real
7. Want to know of any side-effects
8. Want some tests done

The majority of patients who wanted the GP to understand

their problem and explain what was wrong felt that these
expectations, along with many others, were met. However, many
of the support items – for example, want to talk about own
feelings – were not

‘Identifying predictors of high quality care in Study used a range of methods Authors previously defined the More deprived practices were found to have lower scores for
English general practice: observational study to carry out detailed assessments components of quality of care interpersonal care and overall satisfaction
2001’ (Campbell et al 2001) of quality of care in a stratified as a combination of access, the
random sample of practices effectiveness of clinical care and No single type of practice has a monopoly on high quality care:
interpersonal care. small practices provide better access but poorer diabetes care
Study aimed to assess the extent Access and interpersonal care was
of variation in quality of care in measuring by sending a random
English general practice and to sample of 200 adults a copy of the
identify factors associated with general practice assessment survey
high quality care
 Title and Authors Aims Data collection and analysis Questionnaire items or indicators

‘Quality at general practice consultations: To measure quality of care at Main outcome measures were: Doctors’ ability to enable was linked to the duration of their
cross-sectional survey 1999’ (Howie et al general practice consultations in patient enablement, duration of consultation and the percentage of their patients who knew them
1999b) diverse geographical areas and to consultation, how well patients know well, and was inversely related to the size of their practice
determine the principal correlates their doctor, and practice list size
associated with enablement as an Patient enablement instrument
GP Inquiry Paper

outcome measure As a result of your visit to the doctor today, do you feel you are

83 The King’s Fund 2010

1. Able to cope with life
2. Able to understand your illness
3. Able to cope with your illness
4. Able to keep yourself healthy
5. Confident about your health
6. Able to help yourself

Results
• Mean duration of consultation increased when consultations
had a high psychological component. High mean duration of
consultation was associated with a smaller number of short
consultations and a greater number of long and very long
consultations
• Patients’ age over 65 was associated with high enablement
and long consultations and consultations for women lasted
longer than those for men
• The more problems a patient wanted to discuss, the longer
the consultation and the greater the enablement. Knowing
the doctor well resulted in considerably increased enablement
• Enablement was lower in practices of six or more doctors and
greatest in single-handed practices
• Enablement values for male and female doctors were
comparable overall, but female doctors spent more time with
their patients than did male doctors – particularly when the
patient did not know the doctor well
 Title and Authors Aims Data collection and analysis Questionnaire items or indicators

‘A comparison of a Patient Enablement To example the patient Questionnaire forms containing the • Mean scores, expressed as percentages of maximum scores
Instrument against two established enablement instrument (PEI) three instruments in a variety of attainable, were 44.1% for the PEI, 76.9% for the CSQ and
satisfaction scales as an outcome measure against two established combinations were distributed to 77.6% for the MISS
of primary care consultations’ (Howie et al satisfaction measures, the medical 818 patients attending three urban • Correlations between PEI scores and scores for the complete
1998b) interview satisfaction scale and general practices CSQ and MISS instruments were 0.48 and 047
GP Inquiry Paper

the consultation satisfaction • Study shows that enablement is a primary care outcome

84 The King’s Fund 2010

questionnaire measure that is related to but different from general
satisfaction
Testing whether enablement
and satisfaction are related or
separate concepts

To test whether enablement

and satisfaction are related or
separate concepts, and to assess
whether the internal consistency
of the PEI might be enhanced
by inclusion of items from the
satisfaction instruments
 Title and Authors Aims Data collection and analysis Questionnaire items or indicators

‘Patients’ priorities with respect to general To identify patients’ priorities with Surveys (written questionnaires) Aspects that were valued most in the total sample of patients
practice care: an international perspective’ respect to general practice care. were performed in eight countries were:
(Grol et al 1999; Howie et al 1998b) Priorities defined as aspects of across Europe. A list of 40 items 1. Getting enough time during consultations
general practice care that patients or aspects of care was developed 2. Quick service in the case of emergencies
consider more or less important covering important areas of general 3. Confidentiality of information on patients
GP Inquiry Paper

practice care. These were divided 4. Telling patients all they want to know about their illness

85 The King’s Fund 2010

into five sections: 5. Making patients feel free to talk about their problems
1. Medical–technical care
2. Doctor–patient relationship A relatively low ranking was given to aspects such as:
3. Information and support to 1. Waiting time before the consultation
patients 2. GPs helping patients to deal with emotional problems related
4. Availability and accessibility to their health problems
5. Organisation of services 3. GPs accepting it when patients seek alternative treatment

Respondents were asked to rate Items relevant to involvement:

the importance of each separate 1. During the consultation, a GP should have enough time to
aspect of general practice care of a listen, talk and explain to me
five-point scale ranging from ‘not 2. A GP should tell me all I want to know about my illness
important at all’ to ‘most important’ 3. A GP should make me feel free to tell him or her my problems
4. A GP should explain the purpose of tests and treatment in
To rank per section the importance detail
of the eight aspects of care in that 5. A GP and other care providers should not give contradictory
section by identifying which aspect information to me
is to be seen as most important 6. A GP should understand what I want from him or her
7. A GP should be ready to discuss the tests, treatment or
To select the three most important referral that I want
aspects overall out of the five 8. A GP should take a personal interest in me as a person and in
previously identified as the most my life situation
important ones within the five 9. A GP should acknowledge that the patient has the final choice
different sections regarding tests and treatment
 Title and Authors Aims Data collection and analysis Questionnaire items or indicators

‘Continuity of care in general practice: To evaluate the influence of Representative sample of 3,918 • An overall personal patient-doctor relationship increased
effect on patient satisfaction’ (Hjortdahl and continuity of care on patient Norwegian primary care patients the odds of the patient being satisfied with the consultation
Laerum 1992) satisfaction with consultations asked to evaluate their consultations sevenfold, as compared with consultations were no such
by completing a questionnaire relationships existed
• The duration of the patient-doctor relationship had a weak
GP Inquiry Paper

Patients’ overall satisfaction with but significant association with patient satisfaction, while the

86 The King’s Fund 2010

the consultation was rated on a intensity of contacts showed no such association
six-point scale. Continuity of care • Personal, continuous care is linked with patient satisfaction
was recorded as the duration and
intensity of the present patient-
doctor relationship and as patients’
perception of the present doctor
being their personal doctor or not
 Title and Authors Aims Data collection and analysis Questionnaire items or indicators

‘What makes a good general practitioner: do To elicit areas of controversy Questionnaire, distributed to 850 The priority rank order of all 40 aspects was highly correlated
patients and doctors have different views?’ as well as areas of mutual patients and 400 GPs, measured for patients and GPs (0.72). When comparing the priorities of
(Jung et al 1998) agreement between the opinions which of 40 aspects of general patients and GPs, 23 out of 40 aspects differed significantly in
of patients and GPs with regard to practice care were given priority. their rank number
good general practice care Second questionnaire, distributed
GP Inquiry Paper

to 400 different GPs, measured the Areas that GPs and patients agreed on in relation to involvement

87 The King’s Fund 2010

GPs perception of the priorities of 1. A GP should guarantee the confidentiality of information
their patients about all his or her patients
2. A GP should make me feel free to tell him or her my problems
3. A GP should guide me in taking my medicines correctly
4. A GP should provide information on services that provide
practical or personal support and guidance to my relatives

Aspects that were more important to patients than GPs

1. A GP should be ready to discuss the investigations, treatment
or referral that I want
2. A GP should acknowledge that the patient has the final choice
regarding investigations and treatments
3. A GP should allow a second opinion from a different doctor
4. A GP should accept when I seek alternative treatment
5. A GP should tell me all I want to know about my illness
6. A GP should explain the purpose of investigations and
treatment in detail

Aspects that were more important to the GP

1. A GP should understand what I want from him or her
2. A GP should take a personal interest in me as a person and in
my life situation
 Title and Authors Aims Data collection and analysis Questionnaire items or indicators

‘Comparison of patients’ preferences and To determine the relationship Patients visiting five rural practices The longer the period after the consultation, the lower the mean
evaluations regarding aspects of general between patients’ preferences in the Netherlands were asked percentage of all 44 aspects of general practice care rated as
practice care’ (Jung et al 2000) and their evaluations of general to complete a questionnaire good, but the higher the mean percentage of all items rated as
practice care measuring their evaluations or very important
their preferences on 44 aspects of Aspects of general practice care related to involvement
GP Inquiry Paper

general practice care 1. The respect shown to you as a person

88 The King’s Fund 2010

2. Explaining things to you
3. Involving you in decisions about your medical care
4. Explaining purpose of tests and treatment
5. Opportunities to ask questions about problems
6. Making you feel you had time during consultations
7. Explaining results of tests
8. Interest in your personal situation
9. Make it easy for you to talk about your problems
10. Knowing what other providers did – told you
 Title and Authors Aims Data collection and analysis Questionnaire items or indicators

‘Validation of a questionnaire measuring To assess the construct validity 1,390 patients from five Factor analysis showed that items loaded on the appropriate
patient satisfaction with general practitioner and internal reliability of the general practices completed the factors in a five-factor model (doctors, nurses, access,
services’ (Grogan et al 2000) patient satisfaction questionnaire questionnaire. Responses were appointments and facilities)
checked for construct validity and
internal validity Patient satisfaction questionnaire comprises 46 items,
GP Inquiry Paper

participants asked to tick the box from strongly agree to strongly

89 The King’s Fund 2010

disagree

Items related to involvement within the consultation

a. The doctor clearly explains why is wrong before giving any
treatment
b. The practice nurses do not take care to explain things
carefully
c. The doctor does not tell me enough about the treatment
d. The doctor fully explains how the illness will affect my future
health
e. The doctor is always interested
f. The doctor always asks about how my illness affects everyday
life
g. I sometimes feel that I have not been given enough
information by the doctor
h. The practice nurse does not always listen carefully when I
talk about my problems
i. The receptionists explain things clearly to me
j. Sometimes the doctor makes me feel I am wasting his/her
time
k. I don’t feel confident discussing my problems with the doctor
l. The doctor gives me every chance to talk about my problems
m. I do not feel rushed when I am with the doctor
 Title and Authors Aims Data collection and analysis Questionnaire items or indicators

‘Development of a questionnaire to assess To develop a questionnaire to Questionnaire development done Items related to patient involvement
patients’ satisfaction with consultations in assess patients’ satisfaction in a single general practice. The a. This doctor told me everything about my treatment
general practice’ (Baker 1990) with consultations together with method of questioning chosen was b. I thought the doctor took notice of me as a person
initial tests of the questionnaires’ a five-point Likert scale asking for c. This doctor was interested in me as a person and not just my
reliability and validity agreement or disagreement with illness
GP Inquiry Paper

statements about the doctor and the d. There are some things this doctor does not know about me

90 The King’s Fund 2010

consultation e. I felt this doctor really knew what I was thinking
f. I felt able to tell this doctor about very personal things
g. The time I was allowed to spend with the doctor was not long
enough to deal with everything I wanted
h. I wish it had been possible to spend a little longer with the
doctor
 Title and Authors Aims Data collection and analysis Questionnaire items or indicators

‘The development of COMRADE – a patient To develop a new outcome Domain and item formulation was COMRADE scale measured two factors
based outcome measure to evaluate the measure for risk communication based on a systematic literature Satisfaction with communication
effectiveness of risk communication and and treatment decision-making review and data from semi- 1. The doctor made me aware of the different treatments
treatment decision making in consultations’ effectiveness structured focus groups with available
(Edwards et al 2003) consumers 2. The doctor gave me the chance to express my opinions about
GP Inquiry Paper

To explore the reliability and the different treatments available

91 The King’s Fund 2010

validity of the measure 3. The doctor gave me the chance to ask for as much
information as I needed about the different treatment choices
4. The doctor gave me enough information about the treatment
choices available
5. The doctor gave enough explanation of the information about
treatment choices
6. The information given to me was easy to understand
7. I know the advantages of treatments or not having treatment
8. I know the disadvantages of treatments or not having
treatments
9. The doctor gave me a chance to decide which treatment I
thought was best for me
10. The doctor gave me a chance to be involved in the decisions
during the consultation

Confidence in decisions
1. Overall, I am satisfied with the information I was given
2. My doctor and I agreed about which treatment (or no
treatment) was best for me
3. I can easily discuss my treatment again with my doctor
4. I am satisfied with the way in which the decision was made in
the consultation
5. I am sure that the decision made was the right one for me
personally
6. I am satisfied that I am adequately informed about the issues
important to the decision
7. It is clear which choice is best for me
8. I am aware of the treatment choices that I have
9. I feel an informed choice has been made
10. The decision shows what is most important to me
 Title and Authors Aims Data collection and analysis Questionnaire items or indicators

‘The General Practice Assessment To describe the psychometric 200 consecutive patients attending • GPAS acceptable to patients as evidenced by the low
Survey (GPAS) tests of data quality and properties of the general practice routine consulting sessions at 55 proportions of missing data for all items. Reliability of the
measurement properties’ (Ramsay et al assessment survey and its inner London practices were invited instrument was good
2000) acceptability to patients in the to complete the GPAS questionnaire • GPAS is a useful instrument for assessing several important
United Kingdom dimensions of primary care. It is acceptable, reliable and valid
GP Inquiry Paper

92 The King’s Fund 2010

Areas that the GPAS measures: access, receptionists, continuity
of care, technical care, communication, interpersonal, trust,
knowledge, nursing, coordination, referral
‘Observational study of effect of patient To measure patients’ perceptions 865 patients attending 3 general Factor analysis identified five components
centeredness and positive approach on of patient centredness and the practices given questionnaires 1. Communication and partnership - a sympathetic doctor
outcomes of general practice consultations’ relation of these perceptions to measuring patient enablement, interested in patients’ worries and expectations and who
(Little et al 2001) outcomes satisfaction and burden of discusses and agrees their problems and treatment
symptoms 2. Personal relationship – a doctor who knows the patient and
their emotional needs
3. Health promotion
4. Positive approach (being definite about the problem and when
it would settle)
5. Interest in effect on patients’ life

Referrals were fewer if patients felt that they had a personal

relationship with their doctor

If doctors don’t provide a positive, patient-centred approach

patients will be less satisfied, less enabled and may have greater
symptom burden and higher rates of referral
 Title and Authors Aims Data collection and analysis Questionnaire items or indicators

Items related to involvement

The doctor:
1. Was interested in my worries about the problem
2. Was interested when I talked about my symptoms
GP Inquiry Paper

3. Was interested in what I wanted to know

93 The King’s Fund 2010

4. I felt encouraged to ask questions
5. Was careful to explain the plan of treatment
6. Was sympathetic
7. Was interested in what I thought the problem was
8. Discussed and agreed together what the problem was
9. Was interested in what I wanted done
10. Was interested in what treatment I wanted
11. Discussed and reached agreement with me on the plan of
treatment
12. Knows and understands me well
13. Understands my emotional needs
14. Explained clearly what the problem was
15. Was positive about when the problem would settle
16. Was interested in the effect of the problems on my family or
personal life
17. Was interested in the effect of the problem on everyday
activities
‘Use of the consultation satisfaction To examine the feasibility of 1,575 patients in three practices Three dimensions of patient satisfaction were identified:
questionnaire to examine patients’ using a patient satisfaction consulting GPs or community professional care, depth of relationship and perceived time spent
satisfaction with general practitioners and questionnaire designed for use nurses were invited to complete a with the health professional
community nurses: reliability, replicability with GP consultations as an questionnaire
and discriminant validity’ (Poulton 1996) instrument for measuring patient Study showed that it was possible to use the consultation
satisfaction with community satisfaction questionnaire for both GPs and community nurses
nurses
Satisfaction questionnaire statements
1. The doctor listened very carefully to what I had to say
2. The doctor told me everything about my treatment and
explained the reasons for the advice given
3. I thought this doctor took notice of me as a person
4. The time I was able to spend with the doctor was not long
enough to deal with everything I wanted
 Title and Authors Aims Data collection and analysis Questionnaire items or indicators

‘Developing a ”consultation quality index” To construct a consultation quality The CQI was constructed from data CQI scores were in the range 4-18, validity was examined by
(CQI) for use in general practice’ (Howie et index that reflects the core collected from 23,799 patients looking at high and low scorers in greater detail and searching
al 1999b) values of general practice, using consulting 221 doctors in four for correlates with case mix, patient age, and gender and the
as proxies ‘consultation length’ demographically contrasting areas deprivation scores of the practices concerned
and how well patients ‘know the of the United Kingdom
GP Inquiry Paper

doctor’ as process measures, Patient enablement instrument

94 The King’s Fund 2010

and patient enablement as an As a result of your visit to the doctor today, do you feel you are:
outcome measure 1. Able to cope with life
2. Able to understand your illness
3. Able to cope with your illness
4. Able to keep yourself healthy
5. Confident about your health
6. Able to help yourself
‘The medical interview satisfaction scale To examine the validity, reliability The first study phase investigated The new 21-item version with the same four subscales of the
(MISS-21) adapted for British general and applicability of the MISS- the properties of the MISS-29 in a 29 item MISS was developed which has satisfactory internal
practice’ (Meakin 2002) 29 in British general practice UK general practice population and reliability
populations resulted in a modified MISS -21 Patient asked to indicate their level of agreement on a seven-
point Likert scale – very strongly disagree to very strongly agree
The second investigated the
properties of the MISS-21 in a wider Items relevant to involvement
UK general practice population 1. The doctor seemed interested in me as a person
2. The doctor seemed warm and friendly to me
3. The doctor seemed to take my problems seriously
4. I felt free to talk to this doctor about private matters
5. The doctor gave me a chance to say what was really on my
mind
6. I really felt understood by my doctor
7. The doctor did not allow me to say everything that I had
wanted about my problems
8. The doctor did not really understand my main reason for
coming
 Title and Authors Aims Data collection and analysis Questionnaire items or indicators

‘Complex health problems in general practice: To develop a novel instrument in Developed using a comprehensive 102 item version developed consisting of a main somatic, mental
do we need an instrument for consultation, terms of a patient administered literature search, discussions and and social domain axis
improvement and patient involvement? questionnaire – the patient advice with GPs, patients, broad
Theoretical foundation, development and user perspective survey designed to panels of experts and tested in pilot
evaluation of the Patient Perspective survey’ enhance the quality of clinical studies
GP Inquiry Paper

(Laerum 2002) communication within the

95 The King’s Fund 2010

consultation

The King’s Fund (2010)

GP Inquiry Paper

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