Frith, L, University of Manchester;
Frith, L, University of Manchester;
Publisher: UK Data Service
This study used a mixed method approach comprising of an online survey with public contributors involved in health and social care research; an online survey with public involvement professionals, those who are employed by organisations; and qualitative interviews with public contributors. We had 244 respondents to the public contributor survey and 65 for the public involvement professionals (PIPs) survey and conducted 22 qualitative interviews.This study has been prompted by the shift to non-face-to-face - remote - forms of working in patient public involvement and engagement (PPIE) brought on by Covid-19 prevention measures (such as social distancing). Working remotely includes using digital technologies such as: online conferencing software (Zoom, Microsoft Teams), emails, telephone calls and social media (WhatsApp, Facebook). Due to measures such as shielding and social distancing the usual ways of involving the public in research that included face-to-face meetings and events are not possible, and even with the eventual easing of lockdown, remote working is likely to continue. This creates particular challenges for ensuring access and engagement from all parts of society in health and social care research. There is a well-documented digital divide between those who use or have access to digital technologies and those who do not. This digital divide reflects the existing socio-economic inequalities, and PPIE that takes place remotely has the potential to further exclude already disadvantaged groups. This project aims to facilitate and improve ways of doing PPIE remotely and increase the diversity of public contributors involved in health and social care research. Our objectives are to: 1. Understand the barriers and facilitators to remote working, by: a. Exploring public contributors and PPIE professionals' experiences of remote PPIE. b. Exploring public contributors' preferences for different types of remote working. 2. Develop mechanisms for implementing improvements in remote working and ways to increase diversity in PPIE by: a. Conducting a rapid review of research and 'how to guides'. b. Develop training packages. We will recruit public contributors involved in research projects across the UK: the NIHR, charities, universities and other research organisations and people involved professionally with PPIE. This is a mixed-methods study with: surveys, qualitative interviews, and a discrete choice experiment. We will produce an analysis of how remote working in PPIE is affected by socio-economic and health inequalities, make recommendations for improving practice and develop training packages. The public contributor survey was comprised of tick box questions, Likert scale questions and open-ended questions where participants could enter free text responses. The survey asked general questions about role and PPIE experience, digital literacy and different aspects of remote working. We collected demographic information to enable us to draw conclusions from the data on how age, ethnicity, living arrangements and socio-economic status impact on participants use of remote communication tools. The survey ran from September to November 2020. For the survey for PPIE professionals, those who work in PPIE, organising PPIE activities, we developed the survey with input from our public contributors and PPIE professionals from the ARC NWC and the NIHR Research Design Service. Again, the development of this survey drew on our own experiences. We piloted the survey with members of the ARC team and public contributor (NT) to check for sense, consistency and readability. Like the PPIE contributor survey, the professional version was comprised of tick box questions, Likert scale questions, and open-ended questions for additional response. We asked what support and training they offered their public contributors; and any suggestions they had for improving remote working in PPIE. After the survey conducted with public contributors had closed, we purposively sample informants from key communities and conducted 22 semi-structured qualitative interviews with public contributors from across the UK. The topic guide was co-developed with the research team and public contributor (NT) from a preliminary analysis of the survey results and was designed to probe and explore the issues raised by the survey. The interviews were conducted via Zoom and audio reordered with the participant’s consent. The interviews were transcribed and then checked for accuracy and anonymised. The interviews last on average 60 minutes.