Standards and policies
- The UK Policy Framework for Health and Social Care describes what researchers’, sponsors’ and funders’ responsibilities are in terms of public involvement
- The UK standards for public involvement in research provide benchmarks for effective public involvement and indicators against which improvement can be measured - using them will help you follow our principles for best practice in public involvement
- Guidance produced by the HRA, National Institute for Health and Care Research and Health and Social Care Research Wales helps organisations, researchers and involvement staff pay members of the public who are helping to shape life-changing health and social care research across the UK and Ireland.
- There is evidence for the impact of public involvement on the ethical aspects of research, on study enrolment and retention, and on its role within Research Ethics Committee review.
Payment for public involvement
Payment for public involvement in health and care research: a guide for organisations on employment status and tax was produced by the National Institute for Health and Care Research (NIHR), Health Research Authority and Health and Care Research Wales for organisations that pay public contributors as part of their involvement in research.
The guide was published on 12 April 2023 and provides a clear framework for organisations to develop simple and timely payment policies. It includes guidance on employment status, tax and the impact on benefits.
- The ENGAGE and HSC R&D websites have useful tools and guides for thinking through how best to involve people
- National Institute for Health Research (NIHR) INVOLVE has a cost calculator for budgeting for involvement
- Sheffield Teaching Hospitals NHS Foundation Trust has developed a useful set of questions for researchers and involved patients and other members of the public to ask one another
- Centre for Research in Public Health and Community Care guidance on providing feedback to involved people
- Patient Focused Medicines Development’s Synapse project contains international resources and reports, particularly for commercially-funded research.
Finding people with relevant experience
- The People in Research website allows patients and members of the public to search for opportunities to be involved in research, and for researchers to advertise opportunities for involvement
- NIHR INVOLVE has a directory of charities which support the active involvement of patients and carers in research
- NIHR INVOLVE’s supplement for researchers on strategies for diversity and inclusion in involvement contains detailed guidance on laying the foundations for diverse, inclusive involvement opportunities
- In Wales researchers are supported by a Health and Care Research Wales Public Involvement team which includes a researcher request for public involvement support.
- The Learning for Involvement website lists training opportunities and resources about public involvement in research both for researchers and for patients and other members of the public.
Preparing for your REC
- The public involvement team have produced a checklist which talks about the ways you can involve the public in your research.
Involving children and young people
- The GenerationR Alliance consists of Young People’s Advisory Groups around the UK which collaborate with researchers to involve children, young people, and families throughout the research process. Their resources also include guidance and a toolkit for setting up a Young Person’s Advisory Group
- The NIHR INVOLVE page on involving children and young people includes resources, a report on involving children and young people, and a discussion of key issues to consider
- ‘More than we expected!’ A guide to peer research with young people discusses the practicalities of peer research with young people in detail.
The following sites have links to detailed examples of different types of research and the public involvement which benefited it:
- The NIHR INVOLVE library of examples includes examples illustrating the impact of good public involvement on research quality, and on using social media for public involvement
- The Healthtalk website has detailed videos of people talking about a broad range of involvement issues, including funding involvement, diversity in involvement, and organisational support and leadership for public involvement
- The NIHR Collaboration for Leadership in Applied Health Research and Care Oxford includes case studies focusing on different ways of involving people.