Policymakers from across UK health services were presented with the results of two independent citizens’ juries, both indicating support for the use of electronic health records to improve health and benefit the public.
Over 40 decision makers including the National Data Guardian, Dame Fiona Caldicott and the Information Commissioner, Christopher Graham, attended the announcement which could influence future plans regarding how health data - for example the information contained in GP records and data held by hospitals - is used.
The juries findings highlighted that when informed of both of the 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. The juries also concluded that patients should be notified of information sharing schemes and have the right to ‘opt-out’ if they so choose.
Led by researchers from The University of Manchester, each three day citizens’ jury included testimony from five expert witnesses including advocates drawn from both sides of the debate. In total, 34 members of the public, chosen to provide a balanced representation of society, were tasked with answering the same charge: “to what extent should patients control access to patient records?”
Independently facilitated and following much debate, 33 out of 34 jurors, chosen to broadly represent the public in England, voted in support a health database being created, with 24 choosing to give individuals the right to opt out and 6 favouring an opt-in model.
Francesca Costello, one of the jurors that participated in the project said: "I don’t think the general public has a good enough understanding about the power their personal information can have in fuelling new research. Yes, there are some risks but when health records are anonymised they can be used to improve health services in lots of different ways. If this is properly explained I’m sure most people would support it."
Dr Malcolm Oswald from The University of Manchester said: “We wanted to find out what the public thought about this issue, and whether people might change their minds when given information about both the risks and benefits involved.
“It’s a complex subject, but it was clear from the anonymous votes that were cast before, during and after the process that many of the sceptical participants moved towards supporting data-sharing, with proper controls and limits, when the benefit was in the public’s interest.”
Dawn Monaghan, Group Manager at the Information Commissioner’s Office said: “As an expert witness I was able to highlight to the jury the facts relating to the Data Protection Act, including organisation obligations and our role as a regulator. The ICO is alert to the importance of understanding the views of citizens in regards to their information rights. As such we were delighted to be involved in this important project.”
The Citizens’ Juries: Health Data on Trial were delivered as a partnership between The University of Manchester’s Health eResearch Centre and the NIHR Greater Manchester Primary Care Patient Safety Translational Research Centre.
An independent oversight committee monitored the jury design for bias.