Citizens’ Juries on Health Data Sharing in a Pandemic
In collaboration with NHSX and the National Data Guardian for Health and Social Care, we commissioned a set of three online citizens’ juries about health data sharing in a pandemic between March and May 2021.
The juries each spent eight days listening to evidence and deliberating on three national data sharing initiatives which were introduced to tackle the pandemic. The juries concluded that the government was right to use emergency powers to share patient data during the Covid pandemic but greater transparency is needed.
Download the Executive Summary here.
Download the Full Report here.
Detailed project documentation is available for download from the tables at the bottom of this webpage.
- What is a Citizens' Jury?
A citizens' jury is a form of deliberative democracy developed in the 1970s by the Jefferson Center in the USA. A citizens’ jury brings together a broadly 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.
- Why was the Citizens' Juries on patient health data sharing in a pandemic project commissioned?
In an attempt to tackle the Covid-19 pandemic, data governance policies have changed, but with little input from the public. When policy decisions were made, little was known about 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.
- What did the Citizens Juries' do?
The juries were run by Citizens’ Juries c.i.c. (a social enterprise) in partnership with the Center for New Democratic Processes (formerly Jefferson Center). Together, they managesdthe project, recruited jurors, and designed, organised and facilitated the jury process. The three juries had 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 considered 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 heard 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 included a variety of information about the organisations involved in developing systems. Jurors then deliberated and answered questions about the initiative as a whole: whether they supported it, what its future should be, and who should make that decision. You can find below
- 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 addresses 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.
Post-Juries Workshop
On 5th July, 61 people, including jurors, NHS representatives and academics, attended an online workshop to consider the results of the juries. During group work, they recommended what action to take in response to the juries – results are available here.
Jury design documentation
|
No |
Name |
Brief description |
Reviewed by Oversight Panel? |
File for download |
|
A1 |
Citizens juries’ specification |
A specification of the design for the citizens’ juries, including the jury questions and juror selection criteria. |
Yes |
|
|
A2 |
Brief for expert witnesses |
A brief provided to all expert witnesses to guide their presentations to the juries, including a specific brief for each named witness. |
Yes |
|
|
A3 |
Citizens’ juries oversight panel brief |
A brief to the three members of the oversight panel (Christine Patch, Rachel Thompson and Katharine Wright) describing their role to monitor and report bias. |
Yes |
|
|
A4 |
Oversight panel bias questionnaires |
The set of forms completed by the three members of the oversight panel at the end of the project with their assessments and statements on bias. |
N/A |
|
|
A5 |
Jury recruitment questionnaire |
A copy of the online form completed by people applying to be East and West Sussex jurors (an equivalent form was used for Manchester) |
No |
|
|
A6 |
Juror Agreement |
The form completed by all jurors from all three juries to agree to participate. |
Yes |
|
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A7 |
End-of-jury questionnaire |
The questionnaire that all jurors completed at the end of day 8 of the jury process. |
No |
|
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A8 |
Daily bias questionnaire |
A form designed and used to capture feedback from the jurors, particularly about potential bias, at the end of days 1 - 7. |
No |
|
|
A9 |
Observer agreement |
The online form completed by all observers of the Zoom juries requiring agreement to protect privacy of jurors. |
No |
Jury materials
|
No |
Name |
Brief description |
Reviewed by Oversight Panel |
File for download |
|
B1 |
Jurors’ ring binder table of contents |
The table of contents for the materials produced by Citizens’ Juries c.i.c. and the Center for New Democratic Processes, printed out and provided in a ring binder to each jury member. |
No |
|
|
B2 |
Jurors’ ring binder contents |
The folder of materials produced by Citizens’ Juries c.i.c. and the Center for New Democratic Processes, printed out and provided in a ring binder to each jury member. It has 19 sections and includes an overview of the 8-day process, plus all the presentation slides from the 11 expert witnesses. Center for New Democratic Processes copyright material has been redacted from this downloadable version. |
All slides from the 11 expert witnesses were reviewed (and changes made by witnesses in response). |
Jury outputs
|
No |
Name |
Brief description |
File for download |
|
C1 |
Jury 1 (England) Jurors’ Report |
The report of jury 1 conclusions and reasoning produced with the 17 jurors on day 8 of the jury, expressed in the jurors’ own words. |
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C2 |
Jury 2 (Greater Manchester) Jurors’ Report |
The report of jury 2 conclusions and reasoning produced with the 18 jurors on day 8 of the jury, expressed in the jurors’ own words. |
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C3 |
Jury 3 (E & W Sussex) Jurors’ Report |
The report of jury 3 conclusions and reasoning produced with the 18 jurors on day 8 of the jury, expressed in the jurors’ own words. |
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C4 |
Juries’ word cloud |
A word cloud generated automatically using the answers given by the 53 jurors from the three juries in the end-of-jury questionnaire to the question: “Overall, what was it like participating in the citizens' jury over the five days? Please say 3 things in 3 words to sum up your experience.” The bigger the text, the more jurors answered with that word. |
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C5 |
Jury 1 daily bias questionnaire results |
A zip file of 7 spreadsheet of the results from the daily bias questionnaire completed by jurors at the end of days 1-7 of jury 1 (England). On day 8 the jury completed the end-of-jury questionnaire instead. |
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C6 |
Jury 2 daily bias questionnaire results |
A zip file of 7 spreadsheet of the results from the daily bias questionnaire completed by jurors at the end of days 1-7 of jury 2 (Greater Manchester). On day 8 the jury completed the end-of-jury questionnaire instead. |
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|
C7 |
Jury 3 daily bias questionnaire results |
A zip file of 7 spreadsheet of the results from the daily bias questionnaire completed by jurors at the end of days 1-7 of jury 3 (E & W Sussex). On day 8 the jury completed the end-of-jury questionnaire instead. |
|
|
C8 |
Jury 1 end-of-jury questionnaire results |
A summary of the results from the end-of-jury questionnaire completed by jury 1 (England) jurors at the end of day 8. |
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C9 |
Jury 2 end-of-jury questionnaire results |
A summary of the results from the end-of-jury questionnaire completed by jury 2 (Greater Manchester) jurors at the end of day 8. |
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|
C10 |
Jury 3 end-of-jury questionnaire results |
A summary of the results from the end-of-jury questionnaire completed by jury 3 (E & W Sussex) jurors at the end of day 8. |
- Other than where specified, the main author of the documentation above was Dr. Malcolm Oswald, Director of Citizens Juries c.i.c.. Reviewers varied depending on the nature of the document.
2. The Oversight Panel brief was to review the main jury design documentation, but not the jury outputs.