Dynamic Consent: A Possible Solution to Improve Patient Confidence and Trust in How Electronic Patient Records Are Used in Medical Research

TLDR

UK NHS electronic patient records hold vast research potential, but public trust has been eroded by controversies such as the care.data initiative, underscoring the need for trustworthy data sharing. The study proposes a dynamic consent model that lets patients electronically control and be informed about data use to sustain public trust. Dynamic consent allows patients to grant, modify, or withdraw permission over time while receiving real‑time updates on how their data are used. Adopting dynamic consent could unlock the full potential of EPR data for research, yielding benefits for patients and society.

Abstract

With one million people treated every 36 hours, routinely collected UK National Health Service (NHS) health data has huge potential for medical research. Advances in data acquisition from electronic patient records (EPRs) means such data are increasingly digital and can be anonymised for research purposes. NHS England's care.data initiative recently sought to increase the amount and availability of such data. However, controversy and uncertainty following the care.data public awareness campaign led to a delay in rollout, indicating that the success of EPR data for medical research may be threatened by a loss of patient and public trust. The sharing of sensitive health care data can only be done through maintaining such trust in a constantly evolving ethicolegal and political landscape. We propose that a dynamic consent model, whereby patients can electronically control consent through time and receive information about the uses of their data, provides a transparent, flexible, and user-friendly means to maintain public trust. This could leverage the huge potential of the EPR for medical research and, ultimately, patient and societal benefit.