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. |