RT Journal Article
SR Electronic
T1 ‘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)
JF Clinical Medicine
JO Clin Med
FD Royal College of Physicians
SP e620
OP e628
DO 10.7861/clinmed.2021-0386
VO 21
IS 6
A1 Banerjee, Amitava
A1 Pasea, Laura
A1 Manohar, Sinduja
A1 Lai, Alvina G
A1 Hemingway, Eade
A1 Sofer, Izaak
A1 Katsoulis, Michail
A1 Sood, Harpreet
A1 Morris, Andrew
A1 Cake, Caroline
A1 Fitzpatrick, Natalie K
A1 Williams, Bryan
A1 Denaxas, Spiros
A1 Hemingway, Harry
A1 and members of the Health Data Research UK COVID-19 Patient and Public Involvement and Engagement Panel
YR 2021
UL http://www.rcpjournals.org/content/21/6/e620.abstract
AB 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.