New guide to help health professionals involve patients in the research process

New guide to help health professionals involve patients in the research process

The National Institute for Health Research’s Biomedical Research Centre in London has launched a new guide to help researchers involve users in the research process.

The step-by-step guide has been produced to help researchers involve patients, carers, family members and patient groups and charities effectively at the stages of the research which are as follows.

  • The development of the grant application
  • The design and management of the research
  • The undertaking of the research
  • The analysis of the research data
  • The dissemination of research findings

The guide explains how users can help at each stage of the research process, what issues to consider, and how researchers can involve users. It also includes case study examples from around the country where user involvement is making a real difference during the research process.

Sophie Auckland, the Biomedical Research Centre’s User Involvement Manager who produced the guide said: “Medical advances couldn’t happen without patients and healthy volunteers being willing to participate in studies. Yet too often these groups are not invited to have a say about what research is prioritised, how a study is designed, or what questions are asked. This can result in important patient issues being overlooked when grant applications or patient recruitment materials are written, studies are designed or the results are publicised.

“I hope that this simple guide will demystify the user involvement process for anybody involved in carrying out medical research and encourage researchers to involve patients, carers, family members and patient groups in their research.”

Dr David King, Director, NIHR Central Commissioning Facility, said: “The NIHR wants patients and the public to be involved in all stages of research, for example in generating, prioritising and commenting on research ideas, where appropriate. Patient and Public Involvement (PPI) will increase in importance in the work of all NIHR Biomedical Research Centres and Units as it is increasingly recognised that PPI is a win:win for both patients and researchers. This new guide for research staff will greatly enhance PPI across the NIHR, especially in the area of experimental medicine. I welcome the commitment to user involvement at this and other BRCs and BRUs and am looking forward to the further involvement of patients and users in them as a result."

For a copy of Involving users in the research process: A ‘how to’ guide for researchers, email

This guide complements materials aimed at patients and the public and researchers which have already been produced by the Biomedical Research covering user involvement in research.

Have your say about medical research: How patients and the public can get involved is for patients and members of the public and provides basic information about getting involved in the research process.
There are two other leaflets for research staff:

Involving patients and the public in medical research: An introduction and Recruiting and retaining people for user involvement in research.

For copies of these, email or download them from:

12 Apr 2017