Vicente-Edo MJ, Salcedo-Fernández F,
G-I-N Conference Berlin 2012                                                                                                          Diaz del Campo P, Gracia-San Román J.
                                                                                                                                      On behalf of the Working Group for the

      A methodological handbook to                                                                                                    Methodological Handbook to Involve Patients
                                                                                                                                      in the development of Clinical Practice Guidelines.

    involve patients in the context of the                                                                                            mjvicente.iacs@aragon.es



      National Guideline Development
       Program in Spain (GuíaSalud)
                                                       GuíaSalud (www.guiasalud.es) has begun to develop Clinical Practice Guidelines (CPGs) with the participation
 Background                                            of patients. This practice, although increasingly widespread is still limited, which leads us to consider how to
                                                       become a common reality in the development of guidelines.

Provide tools, methods and strategies to facilitate professionals to incorporate patient’s participation in the
development of CPGs to reflect their needs and preferences.
                                                                                                                                    Objectives
                                                       A working group (WG) formed by 15 people with experience in patient involvement in the development of CPGs
                                                       was formed. A scope document (following the phases of the National Methodological Handbook to develop
      Methods                                          CPGs2), and the content (based on the best possible evidence and/or their own experience) that should be
                                                       addressed in the handbook was produced by the group . Once the chapters were finalized the WG reviewed the
                                                       final draft and then was sent to health professionals, patients and patient’s associations for external review. This
                                                       process was monitored by the Editorial Board from GuiaSalud.

                                                                                       • To propose orientation, structure and contents
                                                                 EDITORIAL
                                                                 BOARD (EB)            • To propose authors
                                                                 GUIASALUD
                                                                                       • To review the manual development


   MULTIDISCIPLINARY
    WORKING GROUP
                                                                    15 AUTHORS
                                                                                                    DEFINITIVE VERSION




                                                                                                                         EXTERNAL
                                      DRAFT CHAPTERS




                                                                                                                                          PUBLICATION
                                                                                                                          REVIEW
                                                                       DEBATE
          Nursing                                            AUTHORS                EB
        Sociology
                                                                   Full-text Handbook
       Psychology
                                                                       DEBATE
          Patients                                           AUTHORS            AUTHORS

         Medicine                                                          EB


 This handbook is divided into two parts. First part (chapter 2), which describes different strategies
 (qualitative and quantitative primary research techniques as well as a systematic review of patient-                                                   Results
 perspective studies) that can be used to identify patients’ relevant issues to be addressed in the CPGs
 (patient consultation). Second part (chapter 3, 4 and 5) shows how patients could participate as members of                                                    Index
                                                                                                                                          1. Introduction
 the Guidelines Development Group in each phase of the development process, including as well in the                                      2. Patient’s perspective in the CPG:
 dissemination, implementation and development of patient information (patient participation).                                               Consultation phase
                                                                                                                                               2.1 Literatura review
                                                                                                                                               2.2 Primary research with patients and
                                                                                                                                                   professionlas

                      Discussion                                                              Implications
                                                                                                                                          3. Patient’s participation in the development
                                                                                                                                              of GPC
                                                                                                                                               3.1 Identification, recruitment, resources
                                                                                                                                                    and trainning to patients in the
                                                                                                                                                    elaboration of CPG
 Patients and patient representatives can provide relevant                                   This handbook could help to                       3.2 Definition of scope and objetives of the
 information on their perspectives, preferences, and                                         achieve a quality patient-                            CPG and developing key questions
 experiences with the illness, which can be very enriching for                               oriented CPGs and facilitate                      3.3 Identifying, reviwing evidence and
                                                                                                                                                   developing recommendations
 the guidelines. For that reason, this handbook contributes to                               adherence      to      their                      3.4 External review process
 help guidelines developers providing strategies to incorporate                              recommendations.                             4. Information for patients
 patient’s views in the CPG development process.                                                                                          5. Patient’s implication in dissemination and
                                                                                                                                              implementation of CPG


References
1- Boivin A, Currie K, Fervers B, Gracia J, James M, Marshall C, Sakala C, Sanger S, Strid J, Thomas V, van der Weijden T, Grol R, Burgers J; G-I-N PUBLIC. Patient and public
  involvement in clinical guidelines: international experiences and future perspectives. Qual Saf Health Care. 2010 Oct;19
2. Grupo de trabajo sobre GPC. Elaboración de guías de práctica clínica en el Sistema Nacional de Salud. Manual metodológico. Madrid: Plan Nacional para el SNS del MSC.
  Instituto Aragonés de Ciencias de la Salud - I+CS; 2007. 143 pp.(Guías de Práctica Clínica en el SNS: I+CS; nº 2006/1).

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A methodological handbook to involve patients in the context of the National Guideline Development Program in Spain (GuíaSalud)

  • 1. Vicente-Edo MJ, Salcedo-Fernández F, G-I-N Conference Berlin 2012 Diaz del Campo P, Gracia-San Román J. On behalf of the Working Group for the A methodological handbook to Methodological Handbook to Involve Patients in the development of Clinical Practice Guidelines. involve patients in the context of the [email protected] National Guideline Development Program in Spain (GuíaSalud) GuíaSalud (www.guiasalud.es) has begun to develop Clinical Practice Guidelines (CPGs) with the participation Background of patients. This practice, although increasingly widespread is still limited, which leads us to consider how to become a common reality in the development of guidelines. Provide tools, methods and strategies to facilitate professionals to incorporate patient’s participation in the development of CPGs to reflect their needs and preferences. Objectives A working group (WG) formed by 15 people with experience in patient involvement in the development of CPGs was formed. A scope document (following the phases of the National Methodological Handbook to develop Methods CPGs2), and the content (based on the best possible evidence and/or their own experience) that should be addressed in the handbook was produced by the group . Once the chapters were finalized the WG reviewed the final draft and then was sent to health professionals, patients and patient’s associations for external review. This process was monitored by the Editorial Board from GuiaSalud. • To propose orientation, structure and contents EDITORIAL BOARD (EB) • To propose authors GUIASALUD • To review the manual development MULTIDISCIPLINARY WORKING GROUP 15 AUTHORS DEFINITIVE VERSION EXTERNAL DRAFT CHAPTERS PUBLICATION REVIEW DEBATE Nursing AUTHORS EB Sociology Full-text Handbook Psychology DEBATE Patients AUTHORS AUTHORS Medicine EB This handbook is divided into two parts. First part (chapter 2), which describes different strategies (qualitative and quantitative primary research techniques as well as a systematic review of patient- Results perspective studies) that can be used to identify patients’ relevant issues to be addressed in the CPGs (patient consultation). Second part (chapter 3, 4 and 5) shows how patients could participate as members of Index 1. Introduction the Guidelines Development Group in each phase of the development process, including as well in the 2. Patient’s perspective in the CPG: dissemination, implementation and development of patient information (patient participation). Consultation phase 2.1 Literatura review 2.2 Primary research with patients and professionlas Discussion Implications 3. Patient’s participation in the development of GPC 3.1 Identification, recruitment, resources and trainning to patients in the elaboration of CPG Patients and patient representatives can provide relevant This handbook could help to 3.2 Definition of scope and objetives of the information on their perspectives, preferences, and achieve a quality patient- CPG and developing key questions experiences with the illness, which can be very enriching for oriented CPGs and facilitate 3.3 Identifying, reviwing evidence and developing recommendations the guidelines. For that reason, this handbook contributes to adherence to their 3.4 External review process help guidelines developers providing strategies to incorporate recommendations. 4. Information for patients patient’s views in the CPG development process. 5. Patient’s implication in dissemination and implementation of CPG References 1- Boivin A, Currie K, Fervers B, Gracia J, James M, Marshall C, Sakala C, Sanger S, Strid J, Thomas V, van der Weijden T, Grol R, Burgers J; G-I-N PUBLIC. Patient and public involvement in clinical guidelines: international experiences and future perspectives. Qual Saf Health Care. 2010 Oct;19 2. Grupo de trabajo sobre GPC. Elaboración de guías de práctica clínica en el Sistema Nacional de Salud. Manual metodológico. Madrid: Plan Nacional para el SNS del MSC. Instituto Aragonés de Ciencias de la Salud - I+CS; 2007. 143 pp.(Guías de Práctica Clínica en el SNS: I+CS; nº 2006/1).