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

摘要

Plain English summaryThere 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 class="unordered" style="list-style-type:disc">getting the lay observers registered with the hospitals to allow them to be on the wards in this capacitylay observers and researchers having different understanding of research procedures such as patient consenttrying to find lay observers of different backgrounds and ethnic groups