Patients are willing to share their health data providing there is a direct public benefit, according to the citizens’ juries of a multi-million pound government project.
Connected Health Cities (CHC) is a £20 million scheme, set up by former chancellor George Osborne, which aims to link data sets to researchers across the north of England.
Funded from January 2016 for three years, part of CHC involves setting up citizen juries to understand public opinion on data sharing.
Citizens’ juries are a form of participatory decision making, with a high-profile example being the citizen assembly in Ireland.
During the Health for Informatics conference held in Manchester earlier this week, Mary Tully, CHC’s director of public engagement, told Digital Health News “people were willing to accept uses of data with all the obvious governance caveats that it would be protected, providing they could see that it was being done for public benefit”.
There were two CHC citizens’ juries, made up of 18 people each, who were paid for giving up four days of their time to hear experts and have discussions. Individuals were selected to match the demographic make up of each area.
Tully said as a direct consequence of the citizens’ juries, CHC will now set up an independent advisory panel and change the way CHC explains its work to the public.
“It showed us the importance of understanding what people really understood about how the NHS ran before starting to explain to them how we are going to change things.”
Patients’ sensitivity to health data use was demonstrated through the controversial care.data project.
Begun in 2012 as a plan to link health data sets to academics, care.data ran into problems over what the data could be used for and how patients could opt out.
These concerns were exacerbated when NHS England ran an ill-judged public information campaign in January 2014.
The long shadow of care.data was also demonstrated through the TPP sharing furore, when in March the Information Commissioner’s Office raised “data protection compliance concerns” about TPP’s SystmOne.
Tully said that the citizens’ juries were not a reaction to the care.data controversy: “[They’re] not a response to care.data as such, we’re doing what we consider to be the right thing to do”.
“The right thing to do is to engage with the public.”
John Ainsworth, CHC director, said at the Health for Informatics conference, said “everything we do in CHC, we try to learn the lessons of care.data, and actually do it in a way that brings the public population with us”.
At the event in Manchester, CHC presented a prototype of a patient consent model that used blockchain technology, and would sit behind a patient portal.
Ainsworth said that “blockchain is a great solution for transparency because you’re able record a complete audit trail” for how the data is used.
The prototype could remove the need for mediation from a trusted third party, he said, along with giving patients explicit control of their data.
CHC is split across four regions in the north, with each geographical area focusing on improving data flows in two clinical pathways.
Niels Peek, Greater Manchester CHC director, and said one of his projects is the creation of the Datawell initiative
Datawell is building infrastructure for data sharing across different health and care providers in Great Manchester, currently being rolled out across four trusts and two clinical commissioning groups in the area.
Peek also said he will be trialling a ‘safe haven’ project where data can be analysed in a secure environment, and it cannot leave the facility, which would be a “step change”.
“There’s no risk that the data would proliferate and sit on USBs”, Peek said. “That’s a situation you do not want.”