Dynamic Consent Version 1
Research type
Research Study
Full title
Patient perceptions of electronic health information and consent about health data use.
IRAS ID
135905
Contact name
Will Dixon
Contact email
Sponsor organisation
The University of Manchester
Research summary
Clinical patient records are kept for the primary purpose of delivering healthcare but, when made more widely accessible, such data have huge potential for medical research, clinical audit, service delivery and more. Digital systems such as electronic patient records (EPRs) have the opportunity to efficiently collect and distribute such information. At present, national EPR coverage is limited to primary care. The research benefits of anonymised EPR data are proven by the global success of the UK’s General Practice Research Database, with over 900 peer-reviewed research publications since 1987. An increasing number of hospitals are developing EPR systems which opens an opportunity for data to extend across the healthcare system. The maximum utility of this information is only possible if the data flows with confidence and appropriate permissions are obtained from individuals themselves.
Recent advances in digital technology have led to the increasing concern about the use of personal data, in particular the amount of control individuals feel they have over their personal information and whom may have access to it. The assumption being explored is that although generally supportive of effective sharing of health care data, some patients may have concerns about the extent of this sharing and that providing them with personalised controls will mitigate these concerns. The first part of the study therefore seeks to examine the landscape of these concerns and the second part will assess how such personalised controls might address these concerns.
REC name
North West - Liverpool Central Research Ethics Committee
REC reference
13/NW/0722
Date of REC Opinion
28 Oct 2013
REC opinion
Further Information Favourable Opinion