Involving patients and the public

Involving patients, carers or members of the public (also referred to as ‘consumers’) early on in your research design process can lead to a study that is more relevant to people’s needs, and can encourage more people to take part in the study itself, as well as helping to empower those involved. The inclusion of consumers in the development of research proposals and in the undertaking of the research is increasingly explicitly sought by funders.


INVOLVE is a national advisory group funded by the NIHR, which aims to promote public involvement in NHS, public health and social care research.

► INVOLVE website

► Public involvement in research grant applications: guidelines for researchers, 2006 (PDF)

► Briefing notes for researchers: public involvement in NHS, public health and social care research, 2012 (PDF)

► Writing plain English summaries


Guidelines and case studies of consumer involvement

The NCRI Cancer Experiences Collaborative’s (CECo) 2006 document ‘Consumer Involvement in CECo’ outlines issues around the involvement of patients and the public in research.

In 2011 the NCRI COMPASS Collaborative published an evaluation of their Masterclass on consumer involvement in research entitled ‘Collaborate and Succeed’. The report also provides recommendations to strengthen and expand consumer involvement in research.

UK Clinical Research Collaboration (UKCRC) and NCRI commissioned TwoCan Associates to develop a guidance document for Chairs of research groups involving consumers. The report ‘Patient and public involvement (PPI) in research groups – Guidance for chairs’ was published in 2010.

► Consumer involvement in CECo, 2006 (PDF)

► COMPASS Collaborate and Succeed report, 2011 (PDF)

► Patient and public involvement (PPI) in research groups – Guidance for Chairs, 2010 (PDF)