This document describes the development of a methodological handbook to involve patients in the context of clinical practice guideline development in Spain. A working group was formed consisting of 15 people with experience in patient involvement. The group developed a scope document and chapters covering strategies to identify patient issues and perspectives to include in guidelines, as well as how patients can participate in all phases of guideline development as members of guideline groups. The handbook aims to provide tools and methods to help professionals incorporate patient participation and reflect patient needs and preferences in clinical practice guidelines.

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 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).