Patient and public involvement in clinical guidelines: international experiences and future perspectives.
BACKGROUND
Clinical practice guidelines (CPG) are important tools for improving patient care. Patient and public involvement is recognised as an essential component of CPG development and implementation. The Guideline International Network Patient and Public Involvement Working Group (G-I-N PUBLIC) aims to support the development, implementation and evaluation of guideline-oriented patient and public involvement programmes (PPIPs).


OBJECTIVE
To develop an international practice and research agenda on patient and public involvement in CPG.


METHODS
56 CPG developers, researchers, and patient/public representatives from 14 different countries, were consulted in an international workshop. Recommendations were validated with G-I-N PUBLIC steering committee members.


RESULTS
Many CPG organisations have set up PPIPs that use a range of participation, consultation and communication methods. Current PPIPs aim to improve the quality and responsiveness of CPGs to public expectations and needs, or to foster individual healthcare decisions. Some organisations use structured involvement methods, including providing training for patient and public representatives. A number of financial, organisational and sociopolitical barriers limit patient and public involvement. The paucity of process and impact evaluations limits our current understanding of the conditions under which patient and public involvement is most likely to be effective.


CONCLUSIONS
Greater international collaboration and research are needed to strengthen existing knowledge, development and evaluation of patient and public involvement in CPG.
Boivin
Antoine
A
Scientific Institute for Quality of Healthcare, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands. antoine.boivin@gmail.com
Currie
Kay
K
Fervers
Béatrice
B
Gracia
Javier
J
James
Marian
M
Marshall
Catherine
C
Sakala
Carol
C
Sanger
Sylvia
S
Strid
Judi
J
Thomas
Victoria
V
van der Weijden
Trudy
T
Grol
Richard
R
Burgers
Jako
J
D003256:Community Participation; D004493:Education; D006801:Humans; D038622:Internationality; D010358:Patient Participation; D017410:Practice Guidelines as Topic