Abstract
Plain English summaryPlain English summaryThere is a consensus that patients and the public should be involved in research in a meaningful way. However, to date, lay people have been mostly involved in developing research ideas and commenting on patient information.We previously published a paper describing our experience with lay partners conducting observations in a study of how patients in hospital are involved with their medicines. In a later part of the same study, lay partners were also involved in analysing interviews that a researcher had conducted with patients, carers and healthcare professionals about patient and carer involvement with medicines in hospital. We therefore wanted to build on our previous paper and report on our experiences with lay partners helping to conduct data analysis. We therefore interviewed the lay members and researchers involved in the analysis to find out their views.Both lay members and researchers reported that lay partners added value to the study by bringing their own perspectives and identifying further areas for the researcher to look for in the interviews. In this way researchers and lay partners were able to work together to produce a richer analysis than would have been possible from either alone.Background It is recognised that involving lay people in research in a meaningful rather than tokenistic way is both important and challenging. In this paper, we contribute to this debate by describing our experiences of lay involvement in data analysis.Methods We conducted semi-structured interviews with the lay partners and researchers involved in qualitative data analysis in a wider study of inpatient involvement in medication safety. The interviews were transcribed verbatim and coded using open thematic analysis.Results We interviewed three lay partners and the three researchers involved. These interviews demonstrated that the lay members added value to the analysis by bringing their own perspectives; these were systematically integrated into the analysis by the lead researcher to create a synergistic output. Some challenges arose, including difficulties in recruiting a diverse range of members of the public to carry out the role; however there were generally fewer challenges in data analysis than there had been with our previous experience of lay partners’ involvement in data collection.Conclusions Lay members can add value to health services research by being involved in qualitative data analysis.
Highlights
It is recognised that involving lay people in research in a meaningful rather than tokenistic way is both important and challenging
Some challenges arose, including difficulties in recruiting a diverse range of members of the public to carry out the role; there were generally fewer challenges in data analysis than there had been with our previous experience of lay partners’ involvement in data collection
We have previously reported our experiences of involving lay partners in data collection as an approach to engaging the public in health services research in a meaningful, less tokenistic way [4]
Summary
It is recognised that involving lay people in research in a meaningful rather than tokenistic way is both important and challenging. The UK Heath Research Authority and INVOLVE have issued guidance on the impact of public involvement on the ethical aspects of research and its potential contribution to make research more relevant, define what is acceptable to participants, improve the process of informed consent, improve the experience of participating in research, and improve the communication of findings to participants and the wider public [3]. Domecq et al [2] carried out a systematic review of studies that described involving patients in the conduct, design and/or dissemination of research. They found many examples where lay people were involved in some aspects of research, such as agenda setting and protocol development, but that it was much less common for lay people to be involved in execution or translation of the research. It was concluded that research dedicated to identifying the best methods to achieve engagement was lacking [2]
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