Researchers' experiences of patient & public involvement
Resources and Information
Funded by the National Institute for Health Research to support patient and public involvement in research
NIHR INVOLVE’s benefits helpline service to advise individuals and organisations about accepting payments for involvement when in receipt of welfare benefits
Health and Care Research Wales - information for researchers, patients and members of the public in Wales.
The Wellcome Trust Clinical Research Unit at the University of Edinburgh can offer advice to researchers in Scotland on patient and public involvement.
The NIHR’s recent strategic review of involvement is ‘Going the Extra Mile’.
People in Research – a national online resource where individuals can look for involvement opportunities and researchers can advertise requests for people to get involved. Local equivalents may also be available
National Institute for Health Research Research Design Service – includes links to advice for patients and researchers, and links to Regional Centres offering research design support
Research Design Services may be able to help research teams with funding for involvement honoraria for pre-grant development work.
The NIHR Clinical Research Network provides infrastructure to support research in the NHS and has resources on involvement (mainly directed towards patients and the public):
Medical Research Council resources on PPI
Macmillan Cancer Support offers Building Research Partnerships training courses open to both patients and researchers.
James Lind Alliance Priority Setting Partnerships
Nuffield Council on Bioethics - Children and clinical research: ethical issues
A Researcher’s Guide to Patient and Public Involvement - A guide based on the experiences of health and medical researchers, patients and members of the public