Citizens’ Juries on Health Data Sharing in a Pandemic
What did we do?
In collaboration with NHSX (now part of the NHS Transformation Directorate) 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.
Why was it important?
In an attempt to tackle the COVID-19 pandemic, government policies to control the use of health data changed. 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.
The citizens’ juries are were important as they, consulted members of the general public about some of the key health data sharing policy questions during the COVID-19 pandemic.
How did we do it?
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.
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 managed the 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. You can read how members of the juries were selected here. All three juries considered the same three data sharing initiatives that were 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.
Findings
- Overall, the juries supported the decisions to introduce health data sharing initiatives during the pandemic. Although they had concerns about how some initiatives were introduced, the juries were broadly in favour of them continuing;
- The juries were most supportive of the decision to introduce OpenSAFELY (77% of jurors very much in support) and least supportive of the decision to introduce the NHS COVID-19 Data Store and Platform (38% of jurors very much in support);
- Whilst supportive, many jurors were concerned that there was lack of transparency about the data sharing initiatives, and in particular the NHS COVID-19 Data Store and Platform and Summary Care Record Additional Information initiatives. The juries thought transparency and governance important even in a pandemic;
- A majority were in favour of all the data sharing initiatives continuing for as long as they were valuable (potentially beyond the pandemic and for non-COVID-19 uses), with support ranging from 58% for the NHS COVID-19 Data Store and Platform to 87% for OpenSAFELY across the three juries
- Most jurors considered OpenSAFELY to be the most transparent, trustworthy, and secure of the three data sharing initiatives
- Very few jurors wanted decisions about the future of these data sharing initiatives to be taken by the minister or organisation accountable for the initiative (only 6% overall). Most believed that an independent body of experts and lay people should review the data sharing initiatives
The full results can be found in the Full and Exectuve Summary Reports - both of these reports are available in the downladable resources section below.
What has changed as result of this work?
After the three juries had been completed and analysed we held an online workshop (5th July 2021). The workshop was attended by 61 people, including jurors, NHS representatives, the National Data Guardian for Health and Social Care and academics, and we collectively considered the results of the juries and made recommendations for action. The results of the workshop are available here.
The Citizens’ Juries were extensively cited by Goldacre and Morley in their April 2022 review, Better, Broader, Safer: Using Health Data for Research and Analysis, commissioned by the Secretary of State for Health and Social Care.
The report advocates the use of secure platforms and transparency to earn public trust, stating that the Citizens’ Juries showed that the public understand the concepts behind robust TREs (Trustworthy Research Environments), and strongly support such work.
Dr Nicola Byrne, the National Data Guardian for Health and Social Care published a blog on the importance of listening and changing and 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.”
We presented the jury findings and recommendations to:
- Health Innovation Manchester,
- The Summary Care Record Independent Advisory Board, and
- The NIHR Public Health Research Programme funded project team: Unlocking Data to Inform Public Health Policy and Practice in Kent, Surrey and Sussex (NIHR 133761)
The insights from the Citizens’ Juries were used in Greater Manchester to inform public awareness campaigns and to build trust in healthcare data sharing in relation to the Greater Manchester Care Record.
The Summary Care Record Independent Advisory Board have used the jury findings to recommend changes to the Summary Care Record’s communication and public engagement strategies.
The Juries called for more transparency and meaningful public engagement in health data sharing, which has been reinforced by references to these jury findings by the National Data Guardian and in the Goldacre report.
The Unlocking Data partners considered the juries a best practice example for public engagement and planned to use it as a model for their own plans for engaging the public in their regional data integration projects.
Next steps
We are now building on this work to conduct public engagement with wider GM communities that are typically seldom heard.
In collaboration with the NIHR Greater Manchester Patient Safety Research Centre (PSRC), a public advisory panel and the Voluntary and Charity sector are undertaking a follow up study “Health data sharing during Covid-19 – awareness and perspectives of marginalised, disadvantaged and seldom heard communities in Greater Manchester”.
Concerns about health inequalities have been magnified during the pandemic and data sharing is recognised as important for researching and addressing inequalities.
However, there is much more to be done to enable seldom heard voices to be part of public dialogue and governance associates with data sharing. This will be crucial for safeguarding and building trust across diverse communities and especially where people may associate data sharing with personal risks and negative consequences.
Who we worked with
- Citizens’ Juries c.i.c.
- NHSX (now part of the NHS Transformation Directorate)
- National Data Guardian for Health and Social Care
- NHS England and NHS Improvement
Downloadable resources
- Publications
- Reports
- Executive Summary Report - Data sharing in a Pandemc: Three citizens' juries
- Full Report - Data sharing in a Pandemc: Three citizens' juries
- Post juries workshop report (this was held on the 5th July, after all 3 juries had taken place)
- Blogs
- The importance of listening and changing - Dr Nicola Byrne, National Data Guardian (published 9th July 2021)
- 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
A7
End-of-jury questionnaire
The questionnaire that all jurors completed at the end of day 8 of the jury process.
No
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.
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.
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.
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.
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.
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.
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.
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.
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.
More information
Programme Manager
Dr Ross Atkinosn
ross.atkinson@manchester.ac.uk