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.

 

 

 

 

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

A1 Citizens juries’ specification

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

A2 Brief for expert witnesses

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

A3 Citizens’ juries oversight panel brief

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

A4 Oversight panel bias questionnaires

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

A5 Jury recruitment questionnaire

A6

Juror Agreement

The form completed by all jurors from all three juries to agree to participate.

Yes

A6 Juror Agreement

A7

End-of-jury questionnaire

The questionnaire that all jurors completed at the end of day 8 of the jury process.

No

A7 End-of-jury questionnaire

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

A8 Daily bias questionnaire

A9

Observer agreement

The online form completed by all observers of the Zoom juries requiring agreement to protect privacy of jurors.

No

A9 Observer agreement

 

 

 

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

B1 Jurors’ ring binder table of contents

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).

B2 Jurors’ ring binder contents

 

 

 

 

 

 

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.

C1 Jury 1 (England) Jurors’ Report

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.

C2 Jury 2 (Greater Manchester) Jurors’ Report

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.

C3 Jury 3 (E & W Sussex) Jurors’ Report

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.

C4 Juries’ word cloud

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.

C5 Jury 1 daily bias questionnaire results

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.

C6 Jury 2 daily bias questionnaire results

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.

C7 Jury 3 daily bias questionnaire results

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.

C8 Jury 1 end-of-jury questionnaire results

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.

C9 Jury 2 end-of-jury questionnaire results

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.

C10 Jury 3 end-of-jury questionnaire results

 

 

Notes:

  1. 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.

 

 

 

 

 

 

 

 

 

 

 

 



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