Summary

What is known?
Several risk prediction tools have been developed during the pandemic, but the input of, and their value to, patients and public in their development is unknown.
What is the question?
Have patients and public been involved in existing mortality risk tools, and, can mortality risk information for people with diseases considered ‘high risk’ for COVID-19 be developed with patients?
What was found?
Our systematic review shows lack of public and patient engagement in COVID-19 risk tools to-date and lack of mortality risk information designed for patients with underlying conditions.
Throughout the pandemic, we demonstrate sustained patient and public interest and engagement in developing a risk information tool during and beyond the pandemic.
We show feasibility and utility of a single online portal for mortality information for a wide range of conditions, informed by patients and public.
What is the implication for practice now?
The Montgomery ruling58 places a duty on doctors to provide ‘all material risks’ when consenting patients, but new ways to generate and communicate reliable risk information are required, with wide application beyond COVID-19. There is a role for charities, patient organisations and patients to come together in order to articulate a framework of understanding demands for better risk information across disease silos.