How can we adapt to ensure continued Patient and Public Involvement and Engagement within research?

Conference:

SAPC ASM 2021 - virtual

Talk Code:

P1.15.03

Presenter:

Eloise Ryde

Twitter:

@BASIL_Research

Co-authors:

Andrew Henry1&2, Leanne Shearsmith3, Elizabeth Littlewood2, Samantha Gascoyne2, Della Bailey2, Lauren Burke2, Suzanne Crosland2, Claire Sloan2, Rebecca Woodhouse2, Carolyn A Chew-Graham4, Peter Coventry2, Dean McMillan2, Gemma Traviss-Turner3, David Ekers1&2 & Simon Gilbody2

Author institutions:

Tees, Esk and Wear Valleys NHS FT, Research & Development, Middlesbrough, TS6 0SZ; 1. Tees, Esk and Wear Valleys NHS FT, Research & Development, Middlesbrough, TS6 0SZ; 2. Department of Health Sciences, University of York, York, YO10 5DD; 3. Leeds Institute of Health Sciences, University of Leeds, Leeds, LS2 9NL; 4. School of Medicine, Keele University, Staffordshire, ST5 5BG

Problem

Patient and Public Involvement and Engagement (PPIE) is recognised as a vital component of research, keeping studies grounded from concept, design and management through to interpretation and dissemination. The Covid-19 pandemic may have impacted on the ability of research teams to embed effective PPIE within research, and for PPIE members to continue to contribute to research in light of Covid-19 restrictions.

Approach

We had developed a PPIE Advisory Group (PPIE AG) as part of an existing programme of research (Multi-Morbidity in Older Adults – MODS) when the Covid-19 pandemic arrived in the UK. Our PPIE AG members include older adults with experience of long term health conditions, depression and/or caregiver experience and so were directly affected by the introduction of Covid-19 social restrictions.

We responded to the Covid-19 pandemic by adapting our existing MODS intervention to facilitate the remote delivery of a new research programme (Behavioural Activation for Social IsoLation – BASIL). BASIL aims to evaluate a brief psychological intervention to mitigate depression and loneliness in older adults with long term health conditions during isolation. A vital aspect of the rapid development of the BASIL research programme was the involvement of our existing PPIE AG members. The research team had to adapt to working remotely, including finding ways to facilitate the continued input from the PPIE AG.

Findings

We will describe how we worked in collaboration with our PPIE AG members to enable their continued ‘virtual’ involvement in the research. We will describe the changes that have been implemented as a result of their valuable input; for example, their participation in a co-design virtual stakeholder workshop to adapt the existing MODS intervention to consider social isolation and Covid-19 restrictions for the BASIL study.

We will discuss how PPIE AG meetings are a forum for connecting people in a remote world where social isolation has increased, and highlight the value of remote PPIE for PPIE members and research teams. Finally, we will outline how we strive to work ever more collaboratively with our PPIE AG as the research progresses. This work will be presented in collaboration with our PPIE group.

Consequences

Research can continue to benefit significantly from the involvement and engagement of patients and the public, despite the need to adapt to working together ‘from a distance’. PPIE can respond to the challenges that connecting virtually can bring and can help research to remain grounded, acknowledging the impact of Covid-19 restrictions on many areas of society. PPIE may itself help people to feel connected and to ‘keep them going’ through difficult times. Virtual PPIE may not replace ‘face-to-face’ involvement, but it opens up opportunities for future PPIE work to consider wider geographic representation from patient/public groups in national studies.

Submitted by:

Liz Littlewood

Funding acknowledgement:

This work presents independent research funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme [RP-PG-0217-20006]. The views expressed in this work are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.