Developing and evaluating guidelines for patient and public involvement (PPI) in research.
OBJECTIVE
A growing literature reports the benefits and challenges of patient and public involvement (PPI) in research; nevertheless, understanding PPI in research design remains under-developed. The purpose of this paper is to report learning experiences from involving service users as research partners in two projects that developed and evaluated guidelines for good practice in this regard. The main objective was to evaluate these guidelines.


METHODS
PPI research guidelines were developed through five workshops involving service users/patients, carers, health and social care professionals/managers and academics. Using a participatory qualitative approach, these guidelines were evaluated through mapping them against the two service user research partners' experience within another project.


RESULTS
The guidelines were found to be fit for purpose, as they allowed problems to be easily identified and reassurance that required standards were being met. Both academic and service user research partners learned and gained relevant skills. Two service user research partners also found their daily living skills unexpectedly enhanced by project participation.


CONCLUSIONS
The PPI guidelines, the authors developed were produced by consensus involving several stakeholders. Service users involved as research partners in the project experienced unanticipated personal benefits.
Faculty of Health and Applied Sciences (HAS), University of the West of England, Bristol, UK.
Katherine
K
Pollard
Anne-Laure
AL
Donskoy
Pamela
P
Moule
Christine
C
Donald
Michelle
M
Lima
Cathy
C
Rice
D003142:Communication; D017408:Guidelines as Topic; D006302:Health Services Research / Q000458:organization & administration* / Q000592:standards; D006801:Humans; D033181:Information Dissemination; D010358:Patient Participation / Q000379:methods*; D013997:Time Factors
Evaluation; Guidelines; PPI in research