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Co-Investigators: Dr Niels Peek and Dr Mary Tully , The University of Manchester
Project Lead: Dr Malcolm Oswald, The University of Manchester
Citizens consider a tricky question about health records, ‘to what extent should patients control access to patient records?’, in a jury designed by The University of Manchester to explore whether the public’s opinion can change when presented with evidence.
The Challenge
‘To what extent should patients control access to patient records?’ is a difficult question at the heart of the public debate on health record sharing. Researchers and many others rely on access to information from patient records for a variety of purposes, including to improve the effectiveness and safety of future health services. However, many people feel uneasy about others viewing and using their patient records. One survey suggested that almost 50% of people want to be asked before anonymised information is derived from their health records.
The Research
The University of Manchester carried out research to explore questions around access to patient records. In January 2016 a cross-section of 34 citizens from Greater Manchester were selected to participate in three day “citizens’ juries” to hear from and ask questions of expert ‘witnesses’ and to deliberate on the ‘evidence’. There were two juries, facilitated by Kyle Bozentko from the Jefferson Center, USA and Amanda Hunn from the Health Research Authority, with 17 jurors in each. Each jury tackled the same specific ‘jury mission’ questions and each juror completed a start-of-jury and end-of-jury questionnaire. The process, funded by the MRC Health eResearch Centre and the NIHR Greater Manchester Primary Care Patient Safety Translational Research Centre, was reviewed by an independent oversight panel to ensure the jury design and other materials were not biased.
The Results
Both juries reached similar (but not the same) conclusions in response to the jury questions. The majority of jurors supported the idea that health records should be created and shared as long as there is an opt-out policy so people can withdraw their consent if they wish. Both juries concluded that only organisations and individuals who use the data for research and for public benefit should be granted access to these records. Results from the individual questionnaires show that almost half the jurors moved towards enabling greater sharing of information for public good by the end of the juries.
The Impact
Findings from the citizens’ juries highlight that when informed of both risks and opportunities associated with health data sharing the public believe an individual’s right to privacy should not prevent research that can benefit patients overall. Giving people information allows them to make informed decisions and during the process there was strong evidence that sceptics can move to supporters of data-sharing once they have been presented with the arguments for and against doing so. The citizens’ juries have showcased a democratic way of discussing health data and patient records with the public. The results of the two juries were fed into national public policy at a post-jury workshop in March 2016, attended by national decision-makers, including the Information Commissioner and Dame Fiona Caldicott.
For more information visit: www.herc.ac.uk/citizens-jury