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December 2020

Research Participation Experience

By Isabel Hague and Chloe Grindey –  Research Assistants, NIHR Yorkshire and Humber PSTRC

The Y&H PSTRC has been collaborating with Care Opinion to build a research community of people (patients, carers and other members of the public) who have written stories on the Care Opinion site. We have been trying to understand what people want when they are involved in research to help us plan for how we as researchers can meet these needs. We were also keen to find out if there are existing criteria for assessing the quality of research from a participant’s perspective.

As part of this process, we conducted a rapid review of the literature in this area. The full report can be found here. Here we report a brief summary.

We began by searching Google scholar with the appropriate terms including ‘communicating results to patients’, and ‘health research participation.’ After identifying seemingly relevant articles and searching their reference lists for additional research, thirty-two papers were added to a spreadsheet and subsequently refined by the authors and RL. We excluded those which discussed patient involvement in research design and the disclosure of individual clinical results (as Care Opinion would not be used for the recruitment of patients to clinical trials), which culminated in a final set of eleven papers for review, employing both quantitative and qualitative methods and of which we were confident were pertinent in answering the research questions.

Our analysis revealed strong evidence that patients want to know the findings of research they are involved in. Evidence was less consistent in indicating a preferred means of communication of these findings, although patients generally favoured individualised modes of contact. Literature indicating whether or not patients are interested in knowing the impact of the research was also minimal. In terms of what they want during their involvement, patients emphasised the importance of building a trusting and respectful relationship with the researchers, clear communication throughout the entirety of the investigative process, and quality of care that is at least consistent with standard healthcare practice.

There was an absence of literature that could directly inform the development of criteria to measure the quality of a patient’s research experience. However, we argue that such criteria could be inferred indirectly from the above research. For example, patients often reported an altruistic motivation for involvement in research, so it would make sense to conclude that being informed of the outcome or impact of their involvement would be desirable for them. Although none of the articles we identified included validated measures of patients participation experience, some asked questions of participants that might be useful in future surveys of this kind. For example, one asked if participants would recommend research involvement to a friend or family member and how useful the consent forms were in preparing them for their participation. Another paper used open-ended questions to assess involvement experience, such as ‘How did you find it talking about the issues in this study,’ or ‘How do you feel about research in this area.’ Such questions could be adapted into generalised involvement experience criteria.

This was a rapid review which has obvious limitations. If readers are aware of other literature that is directly relevant to our aims, please do get in touch with Rebecca Lawton at or @LawtonRebecca. We will be sure to acknowledge your contribution.