How much control should patients have over access to their medical data for research purposes?
Health record data can be used in research to identify most effective courses of treatment, potential causes of disease, and best practices, but the use of this data has caused controversy in the UK. The care.data patient record sharing program created by the NHS was halted after public opposition regarding the program’s potential for abuses.
In order to get a clearer understanding of the public’s priorities — privacy contrasted with improved health outcomes — the Health e-Research Center (HeRC) and the Farr Institute sought out the Jefferson Center’s Citizens’ Jury model of deliberation.
The two-part series took place over the course of two weekends in January 2016, with a different selection of 17 citizen jurors attending each three-day event jury. Members of the Greater Manchester area gathered to hear expert testimony regarding the costs and benefits of sharing medical data. Information collected in pre- and post-surveys showed opinion changes, with earlier responses favoring record privacy and later responses supporting medical data sharing for research.
The Jefferson Center and Malcolm Oswald, Honorary Research Fellow at the University of Manchester, led the design of the group deliberation. Kyle Bozentko, our Executive Director, served as lead facilitator. In order to limit bias in the project design, an oversight panel reviewed the expert presentations and other materials. The panel was comprised of a Senior Lecturer in Law at the University of Sheffield, a Senior Policy Officer at the Information Commissioner’s Office, and the Assistant Director of the Nuffield Council on Bioethics.
“I was able to relax in the knowledge that [Kyle] was steering them impartially and expertly towards answering their charge. The jurors reported finding the experience both enjoyable and stimulating, and much of this was thanks to Kyle’s leadership. It was a pleasure.” -Malcolm Oswald, Honorary Research Fellow, University of Manchester
The final report of results (click here to download) demonstrated that individuals’ willingness to allow medical data sharing increased when the individuals were further educated on the subject matter. Of 34 jurors, 33 supported the use of medical record data to improve patient care for the public. With this understanding, the Information Commissioner’s Office can confidently craft policy which reflects the will of informed citizenry.
The Jefferson Center designs and runs Citizens Juries in the UK in partnership with Citizens Juries c.i.c.