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. 2021 Nov;21(6):e620-e628.
doi: 10.7861/clinmed.2021-0386.

'What is the risk to me from COVID-19?': Public involvement in providing mortality risk information for people with 'high-risk' conditions for COVID-19 (OurRisk.CoV)

Amitava Banerjee  1 , Laura Pasea  2 , Sinduja Manohar  3 , Alvina G Lai  4 , Eade Hemingway  5 , Izaak Sofer  6 , Michail Katsoulis  2 , Harpreet Sood  7 , Andrew Morris  3 , Caroline Cake  3 , Natalie K Fitzpatrick  4 , Bryan Williams  8 , Spiros Denaxas  9 , Harry Hemingway  10 ; and members of the Health Data Research UK COVID-19 Patient and Public Involvement and Engagement Panel
Affiliations

'What is the risk to me from COVID-19?': Public involvement in providing mortality risk information for people with 'high-risk' conditions for COVID-19 (OurRisk.CoV)

Amitava Banerjee et al. Clin Med (Lond). 2021 Nov.

Abstract

Patients and public have sought mortality risk information throughout the pandemic, but their needs may not be served by current risk prediction tools. Our mixed methods study involved: (1) systematic review of published risk tools for prognosis, (2) provision and patient testing of new mortality risk estimates for people with high-risk conditions and (3) iterative patient and public involvement and engagement with qualitative analysis. Only one of 53 (2%) previously published risk tools involved patients or the public, while 11/53 (21%) had publicly accessible portals, but all for use by clinicians and researchers.Among people with a wide range of underlying conditions, there has been sustained interest and engagement in accessible and tailored, pre- and postpandemic mortality information. Informed by patient feedback, we provide such information in 'five clicks' (https://covid19-phenomics.org/OurRiskCoV.html), as context for decision making and discussions with health professionals and family members. Further development requires curation and regular updating of NHS data and wider patient and public engagement.

Keywords: coronavirus; mortality; patient and public involvement; risk information.

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Figures

Fig 1.
Fig 1.
Cumulative number of COVID-19 risk prediction tools without and with public involvement, number of global deaths, and iterations of patient and public engagement, January 2020–February 2021.
See this image and copyright information in PMC

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