Adapting Patient and Public Involvement processes in response to the Covid‐19 pandemic

Author:

Snowdon Claire1ORCID,Silver Elizabeth2,Charlton Paul3,Devlin Brian4,Greenwood Emma4,Hutchings Andrew5,Moug Susan6,Vohra Ravinder78,Grieve Richard5ORCID

Affiliation:

1. Department of Medical Statistics, London School of Hygiene and Tropical Medicine University of London London UK

2. Women and Children First London UK

3. ESORT Studies London UK

4. Patient and Public Involvement (PPI) London UK

5. Department of Health Services Research and Policy London School of Hygiene and Tropical Medicine London UK

6. Department of Surgery Royal Alexandra Hospital Paisley Renfrewshire UK

7. Trent Oesophago‐Gastric Unit, Nottingham University Hospitals NHS Trust City Hospital Campus Nottingham UK

8. Nottingham Digestive Diseases Centre, National Institute for Health Research (NIHR) Nottingham Biomedical Research Centre, Nottingham University Hospitals NHS Trust Queen's Medical Centre Nottingham UK

Abstract

AbstractBackgroundThe COVID‐19 pandemic brought rapid and major changes to research, and those wishing to carry out Patient and Public Involvement (PPI) activities faced challenges, such as restrictions on movement and contact, illness, bereavement and risks to potential participants. Some researchers moved PPI to online settings during this time but remote consultations raise, as well as address, a number of challenges. It is important to learn from PPI undertaken in this period as face‐to‐face consultation may no longer be the dominant method for PPI.MethodsUK stay‐at‐home measures announced in March 2020 necessitated immediate revisions to the intended face‐to‐face methods of PPI consultation for the ESORT Study, which evaluated emergency surgery for patients with common acute conditions. PPI plans and methods were modified to all components being online. We describe and reflect on: initial plans and adaptation; recruitment; training and preparation; implementation, contextualisation and interpretation. Through first‐hand accounts we show how the PPI processes were developed, experienced and viewed by different partners in the process.Discussion and ConclusionsWhile concerns have been expressed about the possible limiting effects of forgoing face‐to‐face contact with PPI partners, we found important benefits from the altered dynamic of the online PPI environment. There were increased opportunities for participation which might encourage the involvement of a broader demographic, and unexpected benefits in that the online platform seemed to have a ‘democratising’ effect on the meetings, to the benefit of the PPI processes and outcomes. Other studies may however find that their particular research context raises particular challenges for the use of online methods, especially in relation to representation and inclusion, as new barriers to participation may be raised. It is important that methodological challenges are addressed, and researchers provide detailed examples of novel methods for discussion and empirical study.Patient and Public ContributionWe report a process which involved people with lived experience of emergency conditions and members of the public. A patient member was involved in the design and implementation, and two patients with lived experience contributed to the manuscript.

Funder

Health Foundation

Publisher

Wiley

Subject

Public Health, Environmental and Occupational Health

Reference27 articles.

1. NIHR. UK standards for public involvement in research. 2019. Accessed April 25 2023.https://sites.google.com/nihr.ac.uk/pi-standards/home

2. COVID-19: Public and patient involvement, now more than ever

3. NHS Health Research Authority. Public involvement in a pandemic: lessons from the UK COVID‐19 public involvement matching service. December 28 2021. Accessed April 25 2023.https://www.hra.nhs.uk/planning-and-improving-research/best-practice/public-involvement/public-involvement-pandemic-lessons-uk-covid-19-public-involvement-matching-service/#conclusions

4. HanleyB TarpeyM.Involving the public in COVID‐19 research.2022. Accessed April 25 2023.https://www.hra.nhs.uk/about-us/news-updates/involving-public-covid-19-research-guest-blog-bec-hanley-and-maryrose-tarpey/

5. What has the COVID-19 pandemic taught us about conducting patient and public involvement remotely? Insights from a series of digital meeting observations

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