Published: 10 March 2023

By Dr Catriona Manville, AMRC Director of Research Policy and Simon Turpin, AMRC Policy Officer

One year ago today, the Association of Medical Research Charities (AMRC) and 12 other organisations comprising of funders, regulators and membership bodies published the shared commitment to public involvement. The statement represents a bold pledge to improve how patients and the public are involved in the research process. On its anniversary, we reflect on our experience over the past year and what we have learnt. 

Why was action needed?

We believe public involvement is an essential part of health and social care research. As well as adding value to the research, it also benefits the researchers, the funders, the people who get involved, patients and the wider public. It is also a moral imperative that the voice of patients and the public has an impact on the research that will affect them.

One of the vital roles of charities is to respond to and deliver on the priorities of patients. The vast majority of our member charities already involved public contributors in some way in the research they fund, with the aim of centring their communities’ priorities and delivering maximum benefits both now and in the future. We wanted to showcase this innovative work of our membership to inspire other charities and the wider system. Signing up to the shared commitment provided a framework from which to focus our efforts, bringing together tools, guidance, and agreements of relevance to the full diversity of our membership.

What did we do?

To follow up on the commitment’s promises, we pledged to promote sharing of best practice and learning between our members, review our internal approach to encourage and support patient centricity, and support our charities to include the patient voice at different stages of the research lifecycle, signposting resources and identifying areas that need further thought and discussion. Since signing the Commitment, we have developed a new Public Involvement area of the AMRC website dedicated to guidance and examples of best practice from our members, and published a spotlight report with case studies highlighting the ways in which AMRC charities are involving patients and the public throughout the research process. The most significant project, though, has been the publication of a position statement on involvement, endorsement of which is now a condition of AMRC membership.

When writing the statement, we were conscious of the balance between making a meaningful contribution that would deliver action, and risking it being seen as intimidating or challenging by some members. We therefore prioritised accessibility and inclusivity, choosing sensitive and straightforward language and taking into account the limitations faced by member charities with fewer staff, smaller budgets or less experience with public involvement.

The position statement is designed to be aspirational in message, providing a standard of excellence for members to work towards, while avoiding overly demanding or judgemental language and setting no absolute minimum requirements for members’ PPI activities. We also gave examples of a variety of involvement activities, from research design and sharing learning to organisational governance and funding decision-making. We wanted to provide our members and their researchers with an example of how they should seek to conduct PPI in future, setting a standard to aim for whilst acknowledging that we are all at different steps and on different journeys when it comes to reaching that standard.

Who did we create it with?

We worked closely with our member charities to understand what would be feasible, recognising the diversity of size of organisation and research spend, funding source, disease area and scope, as well as the range of experience in considering involvement. 

The feedback provided valuable insights on potential barriers both our more and less experienced members might face when engaging with the statement, how AMRC could provide support, and how to tailor the statement to best suit our members’ needs and priorities.

And of course, this project wouldn’t have been possible without public contributors. As a membership body for charities, we don’t have direct engagement with the public, and therefore some of our members kindly ‘lent’ us their public contributors, who either lived with a condition themselves or had a family member or loved one with a health condition.

Their feedback was extremely helpful and had a significant impact on the framing and wording of the statement. Specifically, their insights resulted in better differentiation between public involvement and public engagement, consistent use of terminology, and more direct reference to the UK Standards of Public Involvement guidance. It was heartening to receive feedback, not only on the statement itself, but also on the group’s positive experiences in being able to contribute to the development of the statement; and two individuals also offered their assistance in future if needed.

Quotes from those involved included:

 “It was a pleasure contributing in a wee way to such an impressive suite of products; I hope the charities are happy too and wish the endeavour well.”

“​I found the session very interesting and really enjoyed it. If there is anything in the future that you think I might be able to assist with/contribute to, then I will be happy to do so.”

What was the result?

Across the board we were met with encouragement for what we were trying to achieve, and the statement was co-produced and shaped by many discussions. After many drafts and iterations we submitted the final statement to be voted on by our members at the 2022 Annual General Meeting, We were delighted that members endorsed our plan to recognise the importance of and encourage public involvement in charity-funded medical research, by agreeing that all full AMRC members must endorse our position statement on the importance of involvement in medical research.

What did we learn and what’s coming next?

In our view, the broad involvement we achieved in this work, from public contributors as well as the breadth of our membership charities, whilst it was sometimes difficult to balance all the feedback, made it a stronger piece of work. We were excited by the range of different parts of the research funding cycle, and different ways we found that charities were involving public contributors, and want to share this with others. 

However, there is still more to do. Over the next year we will be seeking out ways to assist our charities to deliver on the position statement they support, and thinking through how to measure progress on involvement across the charity sector ensuring accountability as part of our annual data collection and five-yearly audit. We will also be working with the other signatories of the Shared Commitment and beyond to identify and address the as yet unresolved issues. For example, how to increase diversity in involvement and provide charities with guidance on issues such as payment for involvement. Finally, having seen the value of involving patients in the process of developing the statement, we would also like to explore how AMRC can work with public contributors more often ourselves.

This is a journey, and we’re glad we are on it.

This blog post is also published on the NHS Health Research Authority (HRA) website. Image: HRA