Patient and public involvement in data collection for health services research: a descriptive study

PLAIN ENGLISH SUMMARY: There is a consensus that patients and the public should be involved in research in a meaningful way. To date, lay people have been mostly involved in developing research ideas and commenting on patient information but not as much in actual data collection. We have had firsthand experience with lay people helping to conduct a study on how patients in hospital are involved with their medicines. In the first part of this study, we observed doctors’ ward rounds, pharmacists’ ward visits and nurses’ drug administration rounds, to find out if and how healthcare professionals interacted with patients about their medicines. Lay people conducted some of these observations. We wanted to explore the benefits and challenges of having lay people conduct these observations, to tell us more about how lay people can be involved in conducting such research. We interviewed the lay members and researchers involved in this research to find out their views. We also looked at the observation notes to identify what the lay people had noticed that the researchers had not. The lay members and researchers reported that lay members added value to the study by bringing new perspectives. Lay people had noticed some different things to the researchers. We experienced some challenges which need to be addressed. These were: getting the lay observers registered with the hospitals to allow them to be on the wards in this capacity; lay observers and researchers having different understanding of research procedures such as patient consent; trying to find lay observers of different backgrounds and ethnic groups. ABSTRACT: Background: It is recognised that involving lay people with research in a meaningful rather than tokenistic way is both important and challenging. In a recent health services research study addressing inpatient involvement in medication safety, we sought to overcome this challenge by including lay people in collecting observational data in the hospital setting. The aim of this study was to evaluate lay and researcher perspectives on lay involvement in data collection in order to inform and enhance the future role of lay people in carrying out health services research. Methods: We conducted semi-structured interviews with the lay members who collected observational data in our wider study and the researchers who provided support and/or were involved in their recruitment and training. The interviews were transcribed verbatim and coded using open thematic analysis. In addition, we conducted secondary analysis of the observational data to identify the specific contributions of lay observers. Results: We interviewed the three lay members and the four researchers involved. Both these interviews and the secondary data analysis demonstrated that the lay members added value to the study by bringing additional general perspectives on communication with hospital inpatients. Combined with researchers’ perspectives on interactions more specifically related to medication, this provided a broader answer to our research question of how healthcare professionals facilitate inpatient understanding of their medication and involvement in medication safety. This contrasted to the involvement lay observers reported having in previous research where their role had been more consultative. The lay members all reported that carrying out the observations had been an interesting and informative experience. Some challenges arose including the infrastructure not having been in place to support this specialist lay research role, differing paradigms of research governance held by the public and researchers in relation to consent procedures and difficulties in recruiting a diverse range of members of the public to carry out the role. Conclusions: Lay members can add value to research by being involved in data collection within health services research. There is a need to build infrastructure to better support this involvement.