Published: 11 March 2022

The Association of Medical Research Charities in collaboration with the Health Research Authority, the National Institute for Health Research and other funders, regulators and research organisations across the UK have come together, working with members of the public, to sign up to a bold new shared commitment to improve public involvement in research which we hope will help bring about changes that will drive up standards in health and social care research.

Additional signatories include: the Academy of Medical Sciences, the Association of the British Pharmaceutical Industry, Cancer Research UKHealth and Care Research WalesHealth and Social Care Northern IrelandMedicines and Healthcare products Regulatory AgencyNational Coordinating Centre for Public EngagementNHS Research ScotlandUniversities UK, and UK Research and Innovation.

The statement, signed by leaders at each organisation, reads:

‘Public involvement is important, expected and possible in all types of health and social care research.

Together our organisations and members fund, support and regulate health and social care research. This statement is our joint commitment to improve the extent and quality of public involvement across the sector so that it is consistently excellent.

People have the right to be involved in all health and social care research. Excellent public involvement is an essential part of health and social care research and has been shown to improve its quality and impact. People’s lived experiences should be a key driver for health and social care research.

When we talk about public involvement, we mean all the ways in which the research community works together with people including patients, carers, advocates, service users, and members of the community. Excellent public involvement is inclusive, values all contributions, ensures people have a meaningful say in what happens and influences outcomes, as set out in the UK Standards for Public Involvement.

Working together we will support the research community to carry out excellent public involvement.  We will provide or share guidance, policies, systems, and incentives. We will:

  • listen to and learn from the people and communities we involve and apply and share that learning
  • build and share the evidence of how to involve the public and the impact this has
  • support improvements in equality, diversity, and inclusion in public involvement
  • promote the UK Standards for Public Involvement

We will embed this commitment into the decision-making processes of our organisations.’

Linked to this, AMRC has set our own commitments to: 

  • help share best practice and learning between our members, highlighting innovative approaches to involve patients and the public in a meaningful way; 
  • review our internal approach to encourage and support patient centricity, including working with others to ensure patient voice is appropriately represented;  
  • recognising the diversity of our membership, support charities to include the patient voice at different stages of the research lifecycle, signposting resources and identifying areas that need further thought and discussion. 

Nicola Perrin, Association of Medical Research Charities CEO, said: “It’s time to strip away the barriers to good public involvement. We’re all responsible for making this happen across the UK’s health research system. Public involvement isn’t a nice-to-have, it’s fundamental to carrying out quality research.

“By joining this commitment we can help to drive a necessary cultural shift to deliver more treatments and innovations that meet the needs of the public and ultimately help us all.

“To do this we will strengthen the support we give to our member charities so that they have the tools to embed meaningful public involvement across all stages of their research.”