PPI Information and resources

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.

To read more about public involvement in health and social care see the RDS handbook.

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.

Make it Clear campaign: information and guidance on plain English summaries

Benefits advice service for involvement

Budgeting for involvement guide and involvement cost calculator

The research arm of the National Health Service is called the National Institute for Health Research (NIHR). You will find more information about research and how you can get involved on this website.

INVOLVE: an organisation funded by the National Institute for Health Research (NIHR) to support public involvement in NHS, public health and social care research.

Going the extra mile: improving the nation’s health and wellbeing through public involvement in research. The 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)

A series of four Public Information Packs (PIP) produced by INVOLVE outlining information for members of the public who would like to get involved in research; Booklet 1, So what is it all about and Booklet 4 Jargon Buster.

The James Lind Alliance, funded 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 Research Involvement and Engagement journal focuses on patient and wider involvement and engagement in research at all stages.