More transparency key to public support for health data sharing, say citizens’ juries
The Government was right to use emergency powers to share patient data during the Covid-19 pandemic but greater transparency is needed, according to three citizens’ juries.
The juries each spent 36 hours across eight days listening to evidence and deliberating on three national data sharing initiatives which were introduced to tackle the pandemic.
A report on the juries’ findings is published today by researchers from The University of Manchester and the National Institute for Health Research Applied Research Collaboration Greater Manchester (NIHR ARC Greater Manchester), who led the project.
A clear majority of jurors supported the three initiatives, with between 87% and 100% being at least ‘broadly supportive’.
But their levels of support varied: where 77% of jurors voted ‘very much in support’ of OpenSAFELY, an initiative used for research, only 38% were ‘very much in support’ of NHS England’s Covid-19 Data Store and Data Platform.
While supportive, many jurors were concerned about the lack of transparency for some initiatives. They felt transparency and governance were important, even in a pandemic.
The juries supported OpenSAFELY because they considered it the most transparent, trustworthy, and secure of the three data sharing initiatives.
Most jurors felt that all the data sharing initiatives should continue for as long as they were valuable, potentially beyond the pandemic for non-Covid-19 uses.
But only 6% of jurors wanted decisions over the initiative’s future to be taken by a minister or the organisation accountable for the initiative, such as the NHS.
We need the public’s support if we want to use their health data for research and planning. The juries made it clear that transparency and independent oversight are indispensable to get that support
Instead, most believed that an independent body of experts and lay people would be best placed to do this.
The 53 jurors were chosen to broadly reflect the age, gender and other characteristics of the population of England.
One jury consisted of people from across England, one of people from Greater Manchester, and the third of people from West and East Sussex.
The jury findings are pertinent in the context of the ongoing debate on health data sharing.
Dr Nicola Byrne, the National Data Guardian for Health and Social Care said: “We were a partner in this jury project as it is essential that the views of members of the public are heard in regard to how health and care data is used. As the NHS and government look beyond the pandemic to how data could be used and shared in the future, it is vital that the findings from these citizens’ juries are taken into account. They must ensure we build trustworthy systems that patients, professionals and the public can have confidence in.”
Simon Madden, director of policy at NHSX, said: "It is encouraging to see such strong support for these key data sharing initiatives established during the pandemic that helped the NHS save lives. NHSX is committed to engaging with the public and staff about the use of data in health and care which is why we helped commission this important work. 'Data Saves Lives', our draft strategy published last week, sets out our vision for data in health and care and for giving people greater control over how their data is used, for instance we want them to be able to see transparently how it has been used for research. We will look closely at the report of these citizen's juries and we would welcome wider feedback from the public on our draft data strategy over the coming weeks."
Dr Sabine van der Veer and Prof Niels Peek from The University of Manchester worked with Citizens Juries c.i.c. (Manchester, UK) and the Center for New Democratic Processes (Saint Paul, USA) on the project.
Dr Malcolm Oswald, Director of Citizens Juries c.i.c. and an honorary research fellow at The University of Manchester said: “Citizens’ juries hear and weigh evidence, deliberate together, and use their values to assess trade-offs and make judgements to reach reasoned answers to the questions they are set. They are ideal for these kinds of complex policy issues.”
Prof Peek said: “Far-reaching data sharing initiatives were established by the NHS in response to the pandemic with no time for public consultation. So it’s important that the juries had their say on these initiatives on behalf of the public.”
Dr Van der Veer said: “We need the public’s support if we want to use their health data for research and planning. The juries made it clear that transparency and independent oversight are indispensable to get that support.”
The juries were commissioned by the National Institute for Health Research Applied Research Collaboration Greater Manchester, NHSX, and the National Data Guardian for Health and Social Care.
NIHR ARC Greater Manchester is a partnership between providers and commissioners from the NHS, industry, the third sector and the University of Manchester.
The three pandemic data initiatives examined by the juries were:
- Summary Care Record (SCR) Additional Information extended to include additional information for over 50 million people in England without explicit patient consent
- NHS Covid-19 Data Store and Data Platform – a new central store of patient-related data created by NHS England in response to the pandemic with a wide range of software tools
- OpenSAFELY - a platform created at the start of the pandemic by a consortium including the University of Oxford and with the backing of NHS England for pandemic-related research. It enables analyses of patient data accessed from GP patient records in a trusted research environment.
Further information and the executive summary here