In collaboration with NHS England and the National Data Guardian for Health and Social Care, we have commissioned a set of three online citizens’ juries about health data sharing in a pandemic. The juries are taking place between March and May 2021.
What is a Citizens’ Jury?
A Citizens' Jury is a form of deliberative democracy developed in the 1970s by the Jefferson Center in the US. A citizens’ jury brings together a representative sample of individual citizens (or jurors) from different backgrounds who do not have special prior knowledge or expertise. Citizens’ juries put the ‘public’ into public policymaking.
Jurors come together for several days to hear expert evidence, deliberate together and reach a conclusion about public policy questions. By following this approach, citizens’ juries can tell us something that opinion polls and focus groups cannot: what citizens think about a policy question once they have been properly informed about available evidence and have had time to deliberate together. This can help, and give legitimacy to, public authorities making decisions that affect the public.
Citizens’ juries on patient health data sharing in a pandemic
Citizens’ juries have previously been used for informing policy on health data sharing. However, in an attempt to tackle the Covid-19 pandemic, data governance policies have changed, but with little input from the public. This means it is still largely unknown what citizens think about how and under what conditions health data could be shared to respond to a public health emergency.
This is why, in June 2020, the University of Manchester took the initiative to organise citizens’ juries for consulting the general public about policy questions related to health data sharing during the Covid-19 pandemic. In August 2020, we initially agreed to fund two juries. Funding for a third jury was confirmed in October 2020 by NHS England and NHS Improvement, as well as by the National Data Guardian for Health and Social Care
The juries are run by Ctizens’ Juries c.i.c.. This social enterprise manages the project, recruits jurors, and designs, organises and facilitates the jury process together with the Center for New Democratic Processes (formerly Jefferson Center). The three juries have the same design, facilitators and expert witnesses, but different participants (18 each) from across England (jury 1; 16th till 25th-March 2021), Greater Manchester (jury 2; 6th till 15th-April 2021) and Sussex (jury 3; 27th-April till 6th-May 2021). You can read how members of the juries were selected here.
All three juries consider the same three data sharing initiatives as case studies: Summary Care Record Additional Information, NHS Covid-19 Data Store and OpenSAFELY. These initiatives were all introduced under the Control of Patient Information (COPI) notices: temporary legal powers specifically to address the Covid-19 pandemic. Jurors hear evidence from expert witnesses about all of these case studies plus two sub-case studies about products within the NHS Covid-19 Data Store. This evidence includes a variety of information about the organisations involved in developing the systems. Jurors then deliberate and answer questions about the initiative as a whole: whether they support it, what its future should be, and who should make that decision. You can find the exact wording of these questions and more information on the design of the juries in the jury specification (below)
Findings from the juries, alongside the evidence on the case studies presented by expert witnesses, will be made available on this web page in early June 2021
For more information, you can contact:
- Dr Sabine van der Veer (principal investigator; email@example.com) or
- Dr Malcolm Oswald (director of Citizens’ juries c.i.c.; firstname.lastname@example.org).
Citizens’ juries research study
Alongside the juries, we are also conducting a research study to explore how the public’s perceptions on health data sharing may have changed as a result of the pandemic. The study will address questions including:
- “What do the public think about health data sharing during a pandemic once they become informed about the topic?”;
- “What arguments and themes do they draw upon during deliberations?”; and
- “What are topics of agreement, contention and concern?”.
The study findings will be made available on this web page once they have been published.