Links and resources

INVOLVE was established in 1996 and is part of, and funded by, the National Institute for Health Research, to support active public involvement in NHS, public health and social care research. It is one of the few government funded programmes of its kind in the world.

As a national advisory group our role is to bring together expertise, insight and experience in the field of public involvement in research, with the aim of advancing it as an essential part of the process by which research is identified, prioritised, designed, conducted and disseminated.

INVOLVE defines public involvement in research as research being carried out ‘with’or ‘by’ members of the public rather than ‘to’,‘about’ or ‘for’ them. This includes, for example:
  • working with research funders to prioritise research;
  • offering advice as members of a project steering group;
  • commenting on and developing research materials;
  • undertaking interviews with research participants.
When using the term ‘public’ we include:
  • patients;
  • potential patients;
  • carers and
  • people who use health and social care services as well as people from organisations that represent people who use services.
Visit their website here

Going the Extra Mile a strategic review of public involvement in the National Institute for Health Research

A strategic review of public involvement in the National Institute for Health Research (NIHR), Going the extra mile, is published.

The review of public involvement in the NIHR, commissioned by the Director General Research and Development/Chief Medical Officer in March 2014, provided an opportunity for an independent review panel to assess how far the NIHR has been successful in achieving public involvement across its activities to date and to recommend a direction for the NIHR for the future that builds on these achievements.

Patients, carers, researchers and international, third sector and industry representatives contributed to the review by  submitting documents, audio and video evidence, completing questionnaires and online surveys, and through taking part in workshops, meetings and social media, all of which informed the final report and recommendations.

Simon Denegri, the National Director for Patients and the Public in Research​ and Chair of INVOLVE, who led the review said:

'Every day patients and the public go the extra mile to help make UK research happen.  They help decide research priorities, shape its design and spread the word about its importance to fellow citizens.  The public have already made a huge difference to NHS research and the work of the NIHR. We must match their commitment with an equal resolve to involve voices from all parts of the community in all that we do'.

Going the Extra Mile Report - March 2015