What are the Standards, Barriers, and Recommendations while integrating Personal
Health Records (PHR) and Patient-Generated Health Data (PGHD) into Electronic Health
Records
Introduction
PHRs and PGHDs are playing a bigger role in improving patient care and encouraging
consumer engagement in the quickly changing field of health information technology. The
trend toward patient-centered healthcare highlights how crucial it is to provide people the
authority to manage their health data. The purpose of this study is to distinguish between
several PHR standards that specify the methods for gathering, storing, and sharing personal
health data. Additionally, it will evaluate the difficulties in incorporating these technologies
into Electronic Health Records (EHRs), which frequently impede the smooth flow of medical
data. In compliance with federal regulations and industry best practices, the document will
also provide procedures for integrating PGHD into EHR systems. In addition to enhancing
patient outcomes, this integration is crucial for supporting national health programs that
place a high value on patient participation in their treatment. In the end, knowing these
elements will make it easier to improve patient involvement and advance improved
healthcare delivery.
PHR Standards and Models
A PHR is a universally accessible, lifelong source of health information that helps people
make educated decisions about their health, according to the American Health Information
Management Association (AHIMA). The source and intended use of the data determine the
PHR requirements. For instance, although some PHR models integrate data from many
providers, others permit patients to enter their data. PHR data is formatted and transferred
between systems using two common standards: the Continuity of Care Record (CCR) and the
Continuity of Care Document (CCD). The ASTM and HL7 established the CCR and CCD,
respectively, to standardize health data to facilitate integration and interchange with EHRs.
There are three types of PHR models: solo, tethered, and untethered. Patients can access
their medical records using tethered PHRs, which are connected to an organization's
electronic health record. Untethered PHRs are not linked to any particular healthcare
provider and are fully under the patient's control. In contrast, patients who use standalone
PHRs manually enter their health information and choose how to distribute it. The best
model for your business will rely on patient demands and technical capability. Each model
offers varying degrees of integration, control, and dependability.
Barriers to PHR Integration into EHRs
There are many obstacles to integrating PHRs with EHRs, notwithstanding the advantages.
Data interoperability is a major issue since it can be challenging to integrate various PHR
models and formats with EHR systems that employ proprietary structures. Another
significant problem is security; patients may be reluctant to divulge private health
information for fear of data breaches or misuse. Furthermore, healthcare providers may find
it challenging to comply with several, occasionally incompatible standards due to the
absence of standardized legislation surrounding PHR integration.
The risk of data overload is yet another significant challenge. Healthcare professionals could
be inundated with huge volumes of data after PGHD is added, some of which might be
unnecessary or need manual assessment. Burnout is exacerbated for healthcare workers as
a result of this increased burden. PHRs may also be less successful and incomplete or
erroneous data may be uploaded as a result of patients not receiving enough training on
how to utilize or maintain them.
Recommendations for Addressing Barriers
Organizations must give security, education, and standardization top priority in order to
overcome these obstacles. To make it simpler for EHRs and PHRs to communicate data,
widely used standards like CCD and CCR ought to be required. Providers should also make
sure patients are aware of the privacy safeguards in place and explain the advantages of
keeping accurate PHRs. To ensure that only pertinent information reaches healthcare
professionals, the influx of PGHD can be managed with the use of AI-driven solutions and
improved data filtering.
Strict access limits, multi-factor authentication, and encryption are just a few of the security
measures that are necessary to safeguard patient data. Patient confidence will be further
increased by establishing a set of explicit policies governing data access and sharing. Lastly,
more patients will interact with their medical records if PHR platforms are made user-
friendly and available through web portals or mobile applications.
Standards for PGHD Integration into EHR
PGHD is defined by the Office of the National Coordinator for Health Information Technology
(ONC) as patient-generated health data that is not produced in a clinical environment. To
improve patient care, decrease the need for office visits, and increase patient involvement,
the ONC's Health IT Policy Committee suggests integrating PGHD into EHR systems.
Following ONC principles, which stress the significance of data accuracy, privacy, and
appropriate clinical evaluation, is essential to ensuring a seamless integration. Healthcare
organizations must establish a clear procedure for screening and verifying patient data
because not all PGHDs is appropriate for inclusion in an EHR.
The sorts of PGHD that will be most helpful for care—such as patient-reported outcomes,
wearable device data, or home monitoring tools—must be identified by providers, who
should also establish integration protocols. This entails setting up procedures for confirming
the accuracy of the data and educating medical personnel on how to effectively evaluate and
apply it to patient care plans. Additionally, before disclosing PGHD to physicians, it is crucial
to make sure the patient's consent is acquired.
Conclusion
Enhancing patient care, increasing consumer participation, and streamlining healthcare
delivery are all possible outcomes of integrating PHRs and PGHD into EHR systems.
Nevertheless, this integration necessitates removing obstacles to security, interoperability,
and data standardization. Healthcare organizations can fully utilize patient-generated data by
implementing established standards, educating patients and providers, and creating explicit
rules for PGHD inclusion. Developing systems that are safe, easy to use, and able to handle
massive volumes of data without overwhelming healthcare personnel should be the main
goal.
References
Pankaj Khatiwada, Bian Yang, Jia-Chun Lin, Bernd Blobel, (Mar 3, 2024), "Patient-Generated
Health Data (PGHD): Understanding, Requirements, Challenges, and Existing Techniques for
Data Security and Privacy", PubMed,
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10971637/
Jiancheng Ye, (Apr 2, 2024), "The impact of electronic health record–integrated patient-
generated health data on clinician burnout", PubMed,
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8068436/
Victoria L Tiase, William Hull, Mary M McFarland, Katherine A Sward, Guilherme Del Fiol,
Catherine Staes, Charlene Weir, Mollie R Cummins, (Dec 5, 2020), "Patient-generated health
data and electronic health record integration: a scoping review", PubMed,
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7969964/
