Developing a data pact: The relationship between the public, their data, and the health and care system (The Patients Association, 22 September 2023)

Summary

The relationship between patients and their data is deeply personal. This report by The Patients Association shows that patients recognise that the potential for data use to improve care is huge, and that there is widespread support for realising this potential if patients’ concerns are acknowledged and addressed.

It proposes the development of a data pact to outline the relationship between patients, their data and the health system. This could be a useful first step in informing patients about how data is used in the health and care system and a starting point in improving patient confidence. To do this, the pact needs to acknowledge that the system is not perfect, as one part of building public confidence is acknowledging the reasons why at present, confidence may be low.