A rapid evaluation of the reporting and publishing practices of patient and public involvement and engagement in health research within a UK university institute

Involving patients and the public in health research helps ensure that studies are of high quality and focus on the issues that matter most to the people affected. However, researchers do not always explain clearly how they have done this, making it hard to understand how these voices have shaped the research. This study looked at over 500 research papers published by authors from a UK Russell Group university to see how well the involvement of patients and the public was reported. Only one in five papers mentioned how patients and the public were involved in the main text, and fewer still acknowledged contributions from patients or public partners. Very few papers included patient authors or collaborators from charities and community organisations. Although most papers were freely available online, only 10% included a plain English summary to help non-specialists understand the research. To better understand these findings, the researchers worked closely with a group of patient co-authors who had experience collaborating with university researchers. Together, they developed seven recommendations to help improve how the involvement of patients and the public is reported in future studies. This work highlights the need for universities and research institutes to reflect on their practices and provide better support for researchers to work meaningfully and transparently with patients and the public. Clear and consistent reporting of the involvement of patients and the public is essential for building trust, improving research quality, and ensuring that health research truly serves the communities it aims to help. Patient and Public Involvement and Engagement is important to ensure research addresses the issues that matter most to patients and the public. However, reporting and publishing of these activities is variable and inconsistent. This rapid review aimed to assess how effectively, consistently, and transparently Patient and Public Involvement and Engagement is reported on in papers published by authors affiliated with a heath research institute at a UK Russell Group university. A rapid review of all papers published by institute-affiliated authors (1st August 2021 to 31st December 2024) identified using PubMed. We also consulted with a group of patient co-authors to understand their experiences of being a Patient and Public Involvement and Engagement co-author in collaboration with researchers from the same institute. We retained and reviewed 523 papers for inclusion of Patient and Public Involvement and Engagement. There was significant variation in the reporting across the papers included. Overall, 21% of papers had reference to Patient and Public Involvement and Engagement activity in the main body of the paper, and 17% of papers included Patient and Public Involvement and Engagement in the acknowledgements. In terms of co-authorship, 5% of papers included an author with an affiliation to a charity/non-governmental organisation that represented Patient and Public Involvement and Engagement -related interested, e.g. Alzheimer’s Society, Caribbean and African Health Network and 1% of papers included a patient/lived-experience author. A total of 97% of papers were published open access but only 10% of articles included in this review had a plain English or lay summary. Only one paper included a published GRIPP2 form. The Patient and Public Involvement and Engagement group reviewed and contextualised our findings, supporting analysis and development of seven key recommendations to improve comprehensive, consistent, and transparent reporting of Patient and Public Involvement and Engagement in health research at an institute level. This work demonstrates the challenges that Patient and Public Involvement and Engagement faces and the importance of institutions reflecting on the practices of their academics, and the structures they put in place to encourage good and equitable practices of working with patents and the public.