Researcher and Funder perspectives on research funders' support for Public and Patient Involvement in Research (PPI)

This file contains the data files from the two surveys below, and the questionnaires used to collect the data. 2021 Survey: How should Irish research funders support public and patient involvement in research? 2021 Survey: Survey for research funders: Strategies, practices and supports to enhance public/citizen involvement Background: Public and Patient Involvement (PPI) means involvement in the planning and doing of research from start to finish and help tell the public about the results. This paper presents the findings of two surveys conducted by the Health Research Board (HRB) to explore how funders can support PPI and to learn about practices of other national funders. Methods: Two online surveys were conducted. Survey 1 targeted researchers, asking how Irish research funders should support PPI. Results were compared to a similar survey run in 2016. Survey 2 explored Irish research funders’ strategies, practices and supports to enhance public and citizen engagement and involvement in research. Results: 218 complete responses were submitted to Survey 1. Eighty one percent of respondents always or sometimes involve the public or patients in their research, and 92 percent of these were satisfied with the experience. Benefits and barriers were similar to those reported elsewhere. Two thirds of respondents rated their PPI knowledge as good or very good; however, research participation and research outreach activities were classed as PPI activity by some. Key actions by funders to support PPI were seen in the areas of funding, awareness and training. PPI Ignite Network offices and peers were key sources of learning. Eight Irish funders responded to Survey 2. All have adopted a range of strategies and supports for citizen engagement in research, both as funder-led activities and within research they fund. The HRB remains the only public funder in Ireland with explicit emphasis on PPI. Conclusion: While the first-hand experience of PPI amongst researchers has grown, the need to increase knowledge and address barriers continues. Most funders deploy strategies, practices and supports for citizen engagement in research, and some are considering strengthening their approach to shared decision making.