What is it about?

The aim of the study was to explore individuals' experiences of being involved in health research. This included research participants and people who had been involved as patient or public advisors. We were specifically interested in research that was led by clinicians from the professions alongside medicine - that is: nursing, midwifery, allied health professions, healthcare science, psychology and pharmacy. We interviewed 21 people from across the UK who had taken part in different studies. The interviews were audio recorded and the audio files were transcribed into text documents. These documents were carefully read and coded to identify the essence of each sentence. The codes from all interviews were amalgamated to create key themes to describe the content of the interviews and make recommendations for researchers. The four key themes were: 1. Personal impacts for participants or public advisors. All interviewees reported personal benefits of being involved in health research. This included the rewarding nature of being able to help future patients or the public and being able to give something back to their clinical teams. 2. Optimising research involvement. Interviewees provided their perspective of what makes ‘good’ health research. This included societal benefits as well as participant experiences. It was considered that health research should create new and useful knowledge that is shared with clinicians, researchers, participants and the public. 3. Connecting health research with healthcare. Interviewees described positive interactions with their research teams, with many listing research-active clinicians by name and explaining how their research contribution led to the development of these relationships. It was suggested that frontline clinical staff are well placed to identify areas for research and should be supported with this. 4. Capturing research impacts. Interviewees highlighted the complexities of identifying and recording research impact and acknowledged that different stakeholders would have different interests in the processes and outcomes of health research. It was accepted that researchers need to consider financial impacts, but that this should not be the sole focus.

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Why is it important?

This is the first project to explore the views and experiences of research participants, patients and public advisors across a wide range of health research. Interviewees provided suggestions that can be incorporated into future research processes. For example, simplifying documentation, clear signposting of the research activities involved, feedback on the research findings, and routine sharing of relevant research data with clinicians. The findings from this study have been used to create a health research impact capture framework that was pilot tested with research-active clinicians at Imperial College Healthcare NHS Trust. Four interviewees from the study were involved in the development of the framework as patient and public advisors. These individuals were co-authors in a manuscript describing how the framework was created and reporting the findings from the pilot testing. The manuscript has been submitted for publication and is currently under peer review.


I am very grateful for the 21 interviewees who gave up their time to talk about their experiences. The study would not have been possible without their involvement. It was wonderful to have the opportunity to talk with people from across the UK and to hear about the reasons why they became involved with research, the wide range of different projects that people had been involved with, and their suggestions for how we can make health research more accessible to all.

Lisa Newington

Read the Original

This page is a summary of: Reflections on contributing to health research: A qualitative interview study with research participants and patient advisors, PLoS ONE, December 2022, PLOS, DOI: 10.1371/journal.pone.0279354.
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