Exploring remote working practices for patient public involvement and engagement in health and social care research – responding to Covid-19 and rising health inequalities

This study aimed to explore how we can facilitate and improve doing PPIE in health and social care research, without direct face-to-face contact and is funded by the UKRI ESRC and the ARC NWC.

We have produced a short info graphic that summarises the main findings and key recommendations from this project.

We are also planning two publications in academic journals and details of these will follow.

Patient public involvement and engagement (PPIE) in research can lay the groundwork for improving health care and services for all. This is especially the case for disadvantaged groups. First, PPIE can provide important information from affected communities, so that research is more relevant and acceptable to end users. This means that research is more likely to have positive health impacts. Second, PPIE can have personal benefits for public contributors by developing life and employment-skills and empowering individuals and communities.

During the Covid-19 pandemic, doing PPIE became more challenging. In April 2020, the Health Research Authority reported a significant decrease in PPIE in submitted projects. But even before the pandemic, there were concerns that PPIE was not sufficiently diverse. In 2019, an NIHR survey of public contributors found ‘a lack of diversity in the community in terms of age and background’ and addressing this is an NIHR priority.

The study was prompted by the shift to remote, non-face-to-face, forms of working in PPIE brought on by Covid-19 prevention measures. Shielding and social distancing have changed the ways of involving the public in research (such as face-to-face meetings and events). But even now in the post-Covid world, remote working is likely to continue. This creates particular challenges for ensuring access and engagement from all parts of society. There is a digital divide that maps onto existing socio-economic inequalities. PPIE conducted remotely has the potential to further disenfranchise already disadvantaged groups.

The study 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 guidelines for improving in remote working in PPIE.

This is a mixed-methods study with: surveys, qualitative interviews, and a discrete choice experiment.The findings will help us address the inequities of remote PPIE and inform policies that ensure everyone is able to have their say in research.

Study Team
Principal Investigator – Lucy Frith

Naheed Tahir
Professor Mark Gabbay
Dr Shaima Hassan
Dr Verity Watson
Dr Luis Loria
Dr Mark Goodall
Dr Muhammad Hossain
Dr Katie Bristow