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.

Recruitment and retention of clinical trial participants: understanding motivations of patients with chronic pain and other populations

“…Researchers concluded that while financial incentives improved recruitment, the potential for symptom relief and the desire to help others were stronger drivers in this population of reproductive-aged women ( 12 ). This comports with other research showing that, while appreciated and inspiring, monetary compensation is unlikely to be an isolated driver of later-phase clinical trial participation ( 10 ).…”

“…Patients commonly report dissatisfaction about the disconnect between the delivery of clinical care in the community and research and want more integration of the two ( 4 , 10 ). Mechanisms for linking the administration of clinical trials with the delivery of routine or specialty healthcare should be considered, such as educating patients about clinical trials during routine outpatient visits (while being mindful of optimal timing to not overwhelm sick patients) ( 24 , 35 ).…”

“…This is harmful, as it perpetuates disparities in the scientific knowledge base and slows the progress of science. Additionally, when patients decline participation due to unexpressed concerns, they lose access to potential benefits participants commonly report: access to high-quality care, new relationships and a sense of community, deepened understanding of their condition, and satisfaction of contributing to science ( 8 , 10 ).…”

Development of a framework and research impact capture tool for nursing, midwifery, allied health professions, healthcare science, pharmacy and psychology (NMAHPPs)

“…Relevant data related to the reported impacts of research activity by NMAHPPs. This included our previous systematic review [ 26 ], qualitative interviews with healthcare managers and research-active clinicians [ 27 ] and qualitative interviews with research participants and patient advisors [ 28 ]. Additional evidence was identified using a targeted literature search limited to the period after the previous systematic review (January 2020 to October 2022).…”

“…Our previous work documented the types of impact that were associated with NMAHPP-led healthcare research as reported in the literature [ 26 ]. We also explored the views of healthcare managers, research-active clinicians [ 27 ] and people who had been participants or advisors for NMAHPP-led health research [ 28 ]. The current work took place in the context of a large NHS Trust that had a pre-existing research strategy for NMAHPP professions [ 29 ] and offers locally funded competitive research fellowships [ 30 ], in addition to supporting NMAHPP applications for national research funding schemes.…”