Reflections on contributing to health research: A qualitative interview study with research participants and patient advisors.

Abstract

OBJECTIVES: The aims of this study were to explore individuals' experiences of contributing to health research and to identify the types of impact that are perceived as important by participants or patient and public advisors. Specifically, research led by NMAHPP clinicians (Nursing, Midwifery, Allied health professions, Healthcare science, Psychology and Pharmacy). METHODS: Semi-structured one-to-one interviews were conducted with health research participants and patient or public advisors. Interviewees were recruited from five UK sites and via social media. Interview transcripts were analysed using Thematic Analysis to identify key themes and areas of disagreement. RESULTS: Twenty-one interviews were completed, and four main themes were identified. The first, optimising research experiences, included personal reflections and broader recommendations to improve participant experiences. The second, connecting health research with healthcare, described research as key for the continued development of healthcare, but illustrated that communication between research teams, participants, and clinicians could be improved. The third theme explored the personal impacts of contributing to research, with interviewees recalling common positive experiences. The final theme discussed capturing research impacts. Interviewees highlighted potential priorities for different stakeholders, but emphasised that financial impacts should not be the sole factor. CONCLUSION: Individuals who were involved in NMAHPP health research recalled positive experiences and reported good relationships with their research teams. They felt that their contributions were valued. Suggested strategies to optimise the research experience focused on simplifying documentation, clear signposting of the research activities involved, and feedback on the research findings. Routine sharing of relevant research data with clinicians was also recommended. Personal impacts included a deeper understanding of their health condition or health more broadly, and increased confidence interacting with healthcare and other professionals. These findings will be used to inform development of a framework to capture the impact of NMAHPP research.