Published: 14 March 2025

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

This week, alongside many other signatories, we’re celebrating the third anniversary of the launch of the Shared Commitment to Public Involvement in health and social care research. Over the last year, we’ve continued to work in partnership with others across the research system to drive forward improvements in public involvement, with a focus on inclusivity and transparency.  

To deliver better public involvement, we must strive for a culture where people feel welcomed and valued for who they are as an individual. In our work to improve inclusivity, we collaborated on the MESSAGE project to set out the UK gold standard for best practice when incorporating sex and gender into research projects. We were also proud to co-produce the INVISIBLE short film, which aims to promote greater diversity in public involvement and health research. 

Building public trust is key to encouraging more people to get involved in research. One way to accomplish this is by making more research open and accessible. We’ve been supporting our charities to improve transparency by adding plain language summaries to articles published by AMRC charity-funded researchers on the Health Open Research platform. We’ve also co-authored guidance for sharing trial results with participants. 

Guidance on inclusion of sex and gender in medical research 

Sex and/or gender has a major influence on our health and yet most research often doesn’t account for this variable. History shows us that research tested on males will not always apply to everyone. For example, we now know that the signs of cardiac arrest differ by sex.  This makes it all the more important that research involves a representative population, and that research findings are transparently reported by sex and/or gender to ensure accurate conclusions. 

To support this, in November, a new policy framework was published setting out expectations for the consideration of sex and gender at every stage of the research cycle, as well as definitions of terms and answers to key concerns. This work was driven by the George Institute, involving many stakeholders including AMRC and several of our members. 

INVISIBLE short film

Fear and mistrust of clinical trials are prevalent among ethnic minorities in the UK, with only 41% of ethnic minority adults willing to participate in clinical trials compared to 61% of white adults. We must build trust through involvement, ensuring diverse views are represented, so that research can accurately reflect the population’s priorities.

We worked with the Charity Research Involvement Group, member charities, their patient representatives, community organisations and Egality Health to co-produce a 3-minute video featuring a poem titled INVISIBLE, written and performed by artist Duke Al Durham. Based on the lived experiences of patient contributors, it aims to encourage ethic minority individuals to get involved in research.

To date, the film has been viewed over 38,000 times across various social media platforms, generating discussion and - we hope - inspiring people to do their part to increase diversity in research. The film has recently been shortlisted for an award at the PM Society Awards under the category Diversity and Inclusion in Creative Communications. To encourage more people to get involved in charity research, we also set up a webpage listing AMRC charities’ involvement pages.   

Addition of plain language summaries to research outputs on Health Open

Once research is completed, it is crucial that its outputs are transparent and accessible to all. We aim to support our members to deliver this through our partnership with F1000 and the Health Open Research platform. Last month, the platform introduced a requirement for plain language summaries to be included in research articles. These summaries provide clear and concise information on the studies and their findings, making research more accessible to patients and the public, as well as building understanding and trust in health research. This ensures that these open publications can be understood by the broadest audience.   

Barriers to reporting back to trial participants 

While most trial participants want to find out about the results of the research they’ve taken part in, most never get to find out. To help address this issue, we co-authored guidance with UK clinical research funders, including AMRC members, to highlight the barriers to reporting results and provide recommendations as to what different stakeholders could do to improve the situation. 

We hope that these initiatives in partnership with other leading organisations contribute to meaningful involvement and help drive up standards in health and social care research. In 2025, we look forward to continuing to work with others in this space to make a difference and ensure we continue to deliver support and guidance.