'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; Laura Pasea; Sinduja Manohar; Alvina G Lai; Eade Hemingway; Izaak Sofer; Michail Katsoulis; Harpreet Sood; Andrew Morris; Caroline Cake; Natalie K Fitzpatrick; Bryan Williams; Spiros Denaxas; Harry Hemingway; and members of the Health Data Research UK COVID-19 Patient and Public Involvement and Engagement Panel

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)

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

Authors

Amitava Banerjee¹, Laura Pasea², Sinduja Manohar³, Alvina G Lai⁴, Eade Hemingway⁵, Izaak Sofer⁶, Michail Katsoulis², Harpreet Sood⁷, Andrew Morris³, Caroline Cake³, Natalie K Fitzpatrick⁴, Bryan Williams⁸, Spiros Denaxas⁹, Harry Hemingway¹⁰; and members of the Health Data Research UK COVID-19 Patient and Public Involvement and Engagement Panel

Affiliations

¹ University College London, London, UK, honorary consultant cardiologist, University College London Hospitals NHS Trust, London, UK, and honorary consultant cardiologist, Barts Health NHS Trust, London, UK ami.banerjee@ucl.ac.uk.
² University College London, London, UK.
³ Health Data Research UK, London, UK.
⁴ University College London, London, UK, and associate, Health Data Research UK, London, UK.
⁵ Flourish, London, UK.
⁶ AllBright, London, UK.
⁷ Health Education England, London, UK, and general practitioner, Hurley Group Practice, London, UK.
⁸ University College London Hospitals NHS Trust, London, UK, professor of medicine, University College London, London, UK, and director, UCL Hospitals NIHR Biomedical Research Centre.
⁹ University College London, London, UK, associate, Health Data Research UK, and research fellow, Alan Turing Institute, London, UK.
¹⁰ University College London, London, UK, research director, Health Data Research UK, London, UK, and director of healthcare informatics, genomics/omics, data science, UCL Hospitals NIHR Biomedical Research Centre, London, UK.

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.

MeSH terms

COVID-19*
Humans
Pandemics
Prognosis
SARS-CoV-2
Surveys and Questionnaires

Abstract

MeSH terms

Grants and funding