Citizens’ Juries

Two citizens’ juries explore whether the planned and potential uses of health data by Connected Health Cities are acceptable to the public.

Citizens from across north west England came together to discuss the planned and potential uses of health data in the Connected Health Cities programme.

A fundamental aim of Connected Health Cities is to use health data in a way that citizens trust.  So, on the 2nd November 2016, a cross-section of 18 people from north west England gathered in Manchester and began a “citizens’ jury”.  A week later, 18 citizens from north east England came together in York for four days and went through the same process.

The task for these 36 citizens was to tackle a set of jury questions about how Connected Health Cities (CHC) should protect and use health data, and to judge which planned and potential uses are acceptable.

Chosen from over 400 applicants, the jury members were selected to broadly represent the demographic mix of the north of England (according to the 2011 census).  The volunteers selected had no experience working in the NHS or with medical records.

Over four days, the citizens heard from and asked questions of expert witnesses, and carried out group exercises to explore the jury questions. They reached conclusions together, and were polled on their individual views at the start and end of the jury process.

We commissioned an independent community interest company, Citizens’ Juries c.i.c., to design and run the 2 juries, working in partnership with the Jefferson Center, the founders of the citizens’ juries method.

Please download the full jury report and see all the relevant jury documentation below.

Jury members share their thoughts on the use of health data for purposes beyond their direct care.

Key Findings from Connected Health Cities Citizens’ Juries

  1. Jury members were given information about four planned CHC projects. For all four, a majority of people in both juries were supportive of how health data would be used.  A sizeable minority did not support two of the planned uses.
  2. Although CHC has no current plans to share data with industry partners, jury members were also presented with hypothetical scenarios that detailed four different ways that health data could be used by third parties. A majority of jurors supported two of these potential uses (one by a large pharmaceutical organisation, the other by an artificial intelligence company) with approval clearly increasing through the course of the jury.
  3. Only a small minority of jurors were supportive of the two other potential uses (the first was an app for a wearable fitness device, the other by a fitness chain) with approval clearly decreasing through the course of the jury.
  4. Jurors who voted against both planned and potential uses often did so because they doubted that public benefit would result from the use.
  5. Many members of the jury changed their view to become more supportive in general of sharing information for public benefit, even though they may have become less supportive of specific planned and potential uses considered.
  6. There were strong similarities between the conclusions reached by the Manchester and York juries, although some of their reasoning differed.

Signs of bias were reported by a small number of jurors.

Connected Health Cities is currently preparing a formal response to the findings from the CHC citizens’ juries. This response will outline how the CHC programme plans to learn from and adapt current processes as a result of two juries.  

Before publishing this response a draft will be discussed at a workshop of Connected Health Cities staff and stakeholders, including representatives from the two juries, on the 27th February.  A final, approved response will be published on the CHC website shortly afterwards.

"I appreciate that the health service needs money and it needs to work efficiently and the idea of change and being efficient and improving stuff is important but I would like the main driver to be the benefit of the health service not the benefit of individual private companies."

Jim, jury participant, Manchester

This video indicates how the findings of the citizens' juries will impact on the way data is used across the Connected Health Cities programme.

Jury design documentation

No Name Brief description Reviewed by

Oversight Panel?

File for download

A.1 Jury design specification A specification of the design for the two juries, including the jury questions and juror selection criteria

Yes

A1 CHC jury specification

A.2 Programme of jury activities An overview of the morning and afternoon activities for all four days of the juries – the same programme was followed for Manchester and York.

Yes

A2 CHC Programme of jury activities
A.3 Expert witnesses brief A brief provided to all eight expert witnesses to guide their presentations to the juries, including a specific brief for each named witness.

Yes

A3 Brief for expert witnesses CHC juries
A.4 Oversight panel brief A brief to the three members of the oversight panel (who are identified in the document) describing their role to monitor bias.

Yes

A4 CHC citizens jury oversight panel brief
A.5 Oversight Panel signed questionnaires The set of forms completed and signed by the three members of the oversight panel with their assessments and statements on bias.

Yes

A5 CHC Oversight panel signed questionnaires
A.6 Jury recruitment questionnaire The paper form completed by people applying to be jurors (an electronic equivalent was used for web applications)

No

A6 CHC York Citizens’ Jury Online Recruitment survey
A.7 Start-of-jury questionnaire The questionnaire that all jurors completed at the start of day 1 of the jury process.

Yes

A7 CHC start of jury questionnaire
A.8 End-of-jury questionnaire The questionnaire that all jurors completed at the end of day 3 of the jury process.

Yes

A8 CHC end of jury questionnaire
A.9 Jury event details Details sent to jurors shortly before the juries began

No

A9 CHC Event Details Manchester jury
A.10 Daily participant feedback form A form designed and used by the Jefferson Center to capture feedback from the jurors, particularly about potential bias, at the end of day 1,  day 2, and day 3.

No (standard Jefferson Center form)

A10 Jefferson Center bias questionnaire

Jury materials

No Name Brief description Reviewed by

Oversight Panel

File for download
B.1 Jurors’ ring binder contents A folder of materials developed by Citizens’ Juries c.i.c. and the Jefferson Center, printed out and provided in a ring binder to each jury member. It has 21 sections including a table of contents (section 0) and all the slides from the expert witnesses. All expert witness slides (sections Q, R and S) and the anonymisation exercise (section J) were reviewed. B1 CHC juries ring binder contents
B.2 Juror handouts Paper handouts provided to jury members during the course of the four-day event. Anonymisation exercise model example answers were reviewed. B2 CHC juries handouts

Jury outputs

No Name Brief description File for download
C.1 Manchester Jury report Report of the jury conclusions produced by Kyle Bozentko of the Jefferson Center on day 4 of Manchester jury with the 18 jurors. C1 Manchester CHC Jury Report
C.2 York Jury report Report of the jury conclusions produced by Kyle Bozentko of the Jefferson Center on day 4 of York jury with the 18 jurors. C2 York CHC Jury Report
C.3  Report of the two CHC Citizens’ Juries  A report summarising the design and findings of the two citizens’ juries C.3-Report-of-the-two-CHC-Citizens’-Juries
C.4 Combined word cloud for Manchester and York CHC juries A word cloud generated automatically using the answers given by the Manchester and York CHC jurors in the end of jury questionnaire to the question: “Overall, what was it like participating in the citizens’ jury over the four days? Please say 3 things in 3

words to sum up your experience.”

C4 Combined word cloud for Manchester and York CHC juries
C.5 CHC Manchester and York jury demographics A spreadsheet with a breakdown of the demographics of the two juries. C5 CHC Manchester and York jury demographics
C.6 Detailed jury results A spreadsheet of the results data from the juror recruitment survey, start-of-jury questionnaire, jury voting, and end-of-jury questionnaires for both juries. These are individual-level data, with juror identifiers removed. C6 CHC detailed jury 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.