Lived Experience Voices: A Framework for Including Patients and the Public in Funding Applications and Research


Jan Speechley

What are the Issues?

When writing applications to funders there can be very tight deadlines for submissions, this is especially a factor in bids for renewals of funding to extend existing research projects. There can be very little time for consultation with those members of the public with lived experience of the health condition in the proposed research. Their voices are vitally important throughout research from making a decision on a research question, designing the study through to dissemination of the study findings.

Why design the Framework?

The idea to design this framework happened after a meeting with the Leadership Team of DATAMIND when a discussion about a renewal bid prompted a question about involving the patient and public advisory group in this work. The answer was there is rarely time to involve and include them for the reasons outlined above. Therefore their views and ideas for opportunities for involvement throughout the research cycle were being lost. This initially made me feel disappointed in the system and excluded from a vital part of the process. However this quickly developed into a desire to improve and enhance public participation and document all stages of the research process where public involvement should be included. If we cannot be physically involved we produce a framework to capture when, where and how we should be involved in the research. This framework details the why, how and where public involvement enhances research studies.

How can researchers use this Framework?

Researchers writing applications have so much information to design develop and produce in coherent acceptable format for the funders, this is challenging and time consuming and often difficult to include all aspects withing a strict word count. PPI is just one of many section of a funding application but is now expected to be fully planned, costed and developed, anything less is usually challenged by funders and reviewers. The framework details the key areas of inclusion of PPI in research and I hope can be used to ensure a robust plan for involvement and engagement.

Final Thoughts

PPI needs to be planned at all stages and cannot be added in after applications are written. Tokenistic involvement and sparse detail are no longer accepted. I hope that a framework written from the lived experience perspective and with experience of reviewing research applications can help researchers to navigate this vital area of their work. Lived Experience involvement can be challenging but can enhance research and empower all involved to change and improve health care and lives.

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