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

Abstract

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 weregetting 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 groupsAbstractBackground: 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 healt...

The Role of Hospital Inpatients in Supporting Medication Safety: A Qualitative Study

“…The purpose of the lay observations was to obtain perspectives from lay people of different backgrounds. It was therefore not considered appropriate to train them to collect data from the same perspective as researchers nor test for reliability between the lay observers’ and the researchers’ observations [ 20 ]. However, we addressed validity by triangulating the data from observations with the interview data, searching for cases that contradicted the main findings and considering the extent to which the findings were supported by other relevant studies (cumulative validity).…”

Patient and public involvement in patient safety research: a workshop to review patient information, minimise psychological risk and inform research

“…Current work on patient and public involvement (PPI) in research suggests there are few practical examples of how it can be conducted and its potential benefits [ 12 ]. Some positive PPI examples have been documented in response to threats of tokenism [ 24 ], which also include details of the ethical issues and practicalities of using community researchers and patients to gather data in hospital [ 9 , 21 ]. These studies demonstrate the value of PPI in their qualitative descriptions of context, experiential knowledge and contributions to the project [ 23 ].…”

Patients’ Participation in Health Research: A Classification of Cooperation Schemes

“…More precisely, category 1 corresponds to an involvement of patients and relatives as data collectors in the E phase of OHERIC. Collected data may consist of personal opinions and biomedical parameters (eg, blood pressure, glycemic measurements) or self-evaluation according to one’s own perception (eg, pain, anxiety, discomfort) or opinion [ 11 , 12 ].…”

“…They tend not to engage in leading patients through category 2, a work they may consider unnecessary or outside their capacities. They may, however, set up devices to listen to patients’ voices [ 1 , 2 , 11 , 12 ] or train patients as cotrainers and peer experts [ 3 ].…”