What is Patient and Public Involvement in health and social care research?

Patient and Public involvement in research refers to an active partnership between members of the public and researchers. This means that members of the public work alongside the research team and are actively involved in contributing to the research process as advisers and possibly as co-researchers.

Researchers and clinicians may not have first-hand experience of the illness, disease or service that they wish to research. Public involvement representatives can therefore provide researchers with insights into what it is like to live with a particular illness, and what it is like to be a user of a treatment or health service. These insights can help to make health research more relevant to the needs of patients, carers and service users.

Patients and the public can become involved in all stages of the research process including:

  • Prioritisation of studies
  • Design and management of studies
  • Data collection and analysis
  • Dissemination and reporting of findings.

To find out more about how public involvement could be included at any stage of the research process, see the research cycle in the RDS handbook

Useful links and resources

INVOLVEINVOLVE is a national advisory group and was established in 1996. It 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. Its role is to bring together expertise and experience in the field of public involvement in research.
INVOLVE: Guidance on co-producing a research projectThis guidance helps us to understand what we mean by co-producing a research project. It explains the key principles and features of co-producing a research project and suggests ways to realise the principles and key features. Finally, the guidance outlines some of the key challenges that will need addressing in further work, to aid those intending to take the co-producing research route.
INVOLVE briefing notes for researchers10 briefing notes for researchers give information on how to involve members of the public in research
INVOLVE library of publication, evidence and resourcesINVOLVE library of publications, evidence, examples, research projects and resources to help plan or develop public involvement in research
INVOLVE Resources on payment and reimbursementINVOLVE guidance and the latest updates on public involvement and welfare benefits payments and a cost calculator for budgeting for public involvement in research.
INVOLVE Public Information Packs 1-4 (PIPs)A Public Information Pack (PIP) made up of 4 booklets, is for members of the public who are interested in getting involved in health and social care research.
Public Information Pack 1: So what is it all about?
Public Information Pack 2: Getting started
Public Information Pack 3: Finding out more
Public Information Pack 4: Jargon buster
INVOLVE Top Tips7 Top tips for public involvement
INVOLVE Developing training and support for public involvement in researchThis resource is for people who are planning training and support for public involvement in research. It offers advice and guidance to help develop training and support packages specific to your context – whether that’s for members of the public, researchers or both.
NIHR Patients and the PublicLots of resources and information on the National Institute for Health Research (NIHR) website
NIHR "Make it Clear" campaignWith information guidance and resources on writing in plain English
People in ResearchAn online resource where researchers and research organisations advertise opportunities for members of the public to get involved in research.
Learn about researchLearning and development resources into a “learn zone” which can be used by everyone who has an interest in PPIE supporting delivery of patient focused research in the NHS.
The James Lind AllianceFunded by the National Institute for Health Research (NIHR) facilitates Priority Setting Partnerships. These partnerships bring patients, carers and clinicians together to identify and prioritise the treatment uncertainties which they agree are the most important for research.
The RDS HandbookHandbook created by the NIHR RDS to help you plan manage and carry out PPI activities. Please note the research cycle on page 14
Getting involved in research applicationsEast midlands version
Getting involved in research applicationsNational RDS leaflet
Starting OutEssential information for members of the public getting started in involvement in research
Public Involvement StandardsSet of 6 standards and indicators for public involvement in research developed as a UK wide partnership
Going the Extra MileThe final report and recommendations to the Director General Research and Development/Chief Medical Officer (CMO) Department of Health of the ‘Breaking Boundaries’ strategic review of public involvement in the National Institute for Health Research (NIHR).
Research Involvement and EngagementJournal focuses on patient and wider involvement and engagement in research at all stages.

Wessex Public Involvement Network (PIN)

The Research Design Service South Central belongs to a network of organisations that provide involvement opportunities for patients and the public in the Wessex region (which covers much of Hampshire, Dorset and some of Wiltshire).