Published: 7 December 2022

Terminology: In this statement we use the terms the ‘public’ andpeople’ to include patients, people with lived experience, services users, carers and loved ones, donors of tissue, cells and data and other interested members of the public. Also included are people with lived experience of one or more health conditions, whether they are current patients or not.

Medical research charities are dedicated to improving peoples’ lives and outcomes through high quality research. To truly meet the needs of their communities and wider society, charities must involve them throughout their work, including research. Patient priorities drive and shape charity research, so that funding gets directed to where it will make the most difference to people’s lives.

Involvement signifies an active partnership in which the public meaningfully contribute to and collaborate in all aspects and stages of research. Excellent involvement[1] is purpose-led, inclusive, diverse, representative, accessible, values all contributions, ensures people have a meaningful say in what happens, and influences the outcomes of research.[2]

AMRC and all AMRC members recognise the importance of involving the public in producing high quality research that has meaningful outcomes. Involvement should be encouraged in all types of health and social care research. 

Although different charities will deliver this in different ways, all AMRC members are committed to exploring how their organisation and the researchers they fund can do it most effectively.

The public can be meaningfully involved in research in various ways and throughout all stages of the research process. Approaches that charities use include:

  • Informing research priorities and focus
  • Reviewing grants and/or research ethics applications and informing funding decisions for grant awards
  • Co-developing research methodologies
  • Exploring ways to involve and empower diverse communities and/or develop inclusive trials
  • Co-producing and conducting research as part of the team
  • Summarising, distributing, sharing research funding and outputs and applying learning from research
  • Evaluating research
  • Contributing to governance and decision-making processes

In support of this, AMRC is committed to continuing to share best practice and highlight innovative approaches across the sector and is a signatory of the Shared Commitment to Public Involvement.[3]

[1] By ‘involvement’, we mean where people and the public work with research organisations and are actively involved in research.  This is different from ‘participation’ which is taking part in a research study as a participant.

[2] Further information on involvement can be found through the UK Standards for Public Involvement 

[3] AMRC public involvement webpage