We are pleased to publish a new document which provides guidelines to embed patient and public involvement (PPI) in a research funding call. The document provides advice and steps to ensuring that PPI is meaningfully undertaken throughout the entire funding cycle. The guidelines were developed by Health Data Research UK (HDR UK) with input from public contributors who were involved in shaping and developing the document. The guidelines were developed with the learnings from a HDR UK led funding call and have been designed to be used internally, and shared with external stakeholders.
How were patients and the public involved?
In January 2021, 12 urgent research projects from across the UK received funding following a rapid call for COVID-19 data research initiatives by HDR UK, the Office for National Statistics (ONS) and UK Research and Innovation (UKRI). The projects form part of the Data and Connectivity National Core Study – a programme which enables access to health and administrative data from across the UK and provides the crucial infrastructure for vital data research.
A key requirement of the funding call ensured proposals demonstrated that patient and public involvement and engagement (PPIE) is an integral part of the planned project. The panel of reviewers included three public contributors from the Health Data Research UK Public Advisory Board who reviewed and scored the PPIE plans as well as the intended benefit to patients and the public.
Additionally, support and guidance was offered to each of the funded research projects to develop comprehensive and meaningful plans for PPIE. Our HDR UK involvement team also provided support in recruiting public contributors for individual involvement opportunities through established networks, as well as links to external networks.
Throughout the six months there were many learnings on how to best embed patient and public involvement in a research funding call.
What was the impact of involving patients and the public?
It was clear that the learnings we had gained through the experiences of PPIE Leads, public contributors, researchers and as funders would be useful more broadly and to a much wider audience. As such, working alongside the Data and Connectivity Lay Advisory Group, we have developed a set of Best Practice Guidelines to help those conducting funding calls ensure that PPI is meaningfully embedded throughout the entire funding cycle. Our Lay Advisory Group were involved in shaping and developing the Best Practice Guidelines which outlines advice on how to embed patient and public involvement in the:
- Funding call application and initial selection criteria
- Application form, including:
- Plain English Summary
- Stages of research which will include PPIE
- Questions to elicit further details on PPIE
- Reviewing and scoring applications
- Reviewing and providing feedback on PPIE plans
- Monitoring PPIE plans and evaluation
Alongside the guidelines, we have also produced templates for the application form, PPIE plan and monitoring form which can be amended depending on the specific need of the funding call.
Dr Sarah Bunney, a lead researcher on one of the 12 funded research projects told us why she believes in the importance of PPIE in health data research and the impact of embedding PPIE in a research project Why PPIE is so important to health data research – Dr Sarah Bunney, Imperial College London – HDR UK
Please contact Judy Slape, Public Engagement Officer, if you have any questions or would like advice on using these guidelines in a funding call firstname.lastname@example.org
CO-CONNECT: A layperson’s perspective on using health data, building trust and the benefits of sharing
18 January 2022
Karen Mooney, one of the Public and Patient Involvement team members for the CO-CONNECT project, guest-blogs on how getting closer to data has shifted her perspective.