title: Dynamic consent: a possible solution to improve patient confidence and trust in how electronic patient records are used in medical research.
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.
authors.affiliation: Arthritis Research UK Centre for Epidemiology, University of Manchester, Manchester, United Kingdom.
authors.forename: Hawys
authors.identifier: http://orcid.org/0000-0003-4787-1236
authors.initials: H
authors.lastname: Williams
authors.forename: Karen
authors.identifier: http://orcid.org/0000-0003-2038-2600
authors.initials: K
authors.lastname: Spencer
authors.forename: Caroline
authors.identifier: http://orcid.org/0000-0002-0539-928X
authors.initials: C
authors.lastname: Sanders
authors.forename: David
authors.identifier: http://orcid.org/0000-0003-0862-5737
authors.initials: D
authors.lastname: Lund
authors.forename: Edgar A
authors.identifier: http://orcid.org/0000-0003-1779-0814
authors.initials: EA
authors.lastname: Whitley
authors.forename: Jane
authors.identifier: http://orcid.org/0000-0002-7311-4725
authors.initials: J
authors.lastname: Kaye
authors.forename: William G
authors.identifier: http://orcid.org/0000-0001-5881-4857
authors.initials: WG
authors.lastname: Dixon
keywords: NHS; care.data; confidentiality; data linkage; dynamic consent; electronic patient record (EPR); governance; medical research; privacy