Speaker
Description
Authors: Kristin Liabo (University of Exeter, UK), Emma Cockcroft (University of Exeter), Kate Boddy (University of Exeter)
Background: In public involvement people who have relevant lived experience as patients or community members are partners in research and inform study design. ‘Lived experience’ might have a different meaning in primary prevention research, when the focus is on preventing future (negative) experiences.
The Engaged Health Research Group at the University of Exeter has published studies on public involvement which can help shape meaningful and ‘good’ involvement plans (e.g. Liabo et al 2024, 2022, 2020 and Cockcroft et al 2020).
Methods: This campfire will engage delegates in considering how to involve people who are ‘at risk of’ in primary prevention research. It will have the following structure:
Introduction: This will include definitions of ‘involvement’ and ‘prevention research’ for the purpose of this campfire.
Planning for involvement: Delegates will be presented with a prevention-focused research question. They will then, step-by-step, be invited to contribute to an involvement plan for designing a study that addresses that question. We will discuss who to involve (who is ‘at risk’), how to approach people and how to work with them in a non-judgemental and open manner.
Closing: The session will close by a summary of key points emerging from the discussion, supplemented by any additional findings from the involvement research that did not surface in the debate.
Results: Delegates will experience involvement in primary prevention studies can be prepared for and planned, key challenges to consider and ways of addressing these.
Discussion: The studies underpinning this campfire found that reciprocal relationships that engender trust between researchers and community members are essential for meaningful involvement. In their planning for involvement researchers could consider whether the people they seek to engage are experiencing epistemic injustice, what their experiential knowledge consist of and what emotional labour might be required.
| Conflict of interest | None known |
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