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Citizens’ Jury

Jury of citizens ponder tricky questions about health records

Take a look at what happened during the citizens' juries

Decision makers from across UK health give their reactions to the juries verdict

Jury of citizens ponder tricky question about health records

To what extent should patients control access to patient records?

It’s a difficult question that is at the heart of the public controversy which arose in 2014 around care.data and the “selling” of hospital records to private companies. Researchers, epidemiologists, managers and many others rely on getting access to detailed information in patient records to improve the effectiveness and safety of future health services. But many people feel uneasy about others delving into their patient record, even if it is for a good cause. One survey suggested that almost 50% of people want to be asked first before anonymised information is derived from their health record. But is that right? Should individuals be allowed to control access to their health record even where it interferes with the wider public good?

Health data on trial - the public debate.

One survey suggested that almost 50% of people want to be asked first before anonymised information is derived from their health record. But is that right?

The University of Manchester is carrying out research to explore these tricky questions. A cross-section of 18 adults from Greater Manchester were selected to meet on three consecutive days in January 2016 to hear from and ask questions of experts, and to deliberate.  To validate the outcomes of the process, a second citizens’ jury with 18 different jurors was also run in January. The project is funded by the MRC Health e-Research Centre and the NIHR Greater Manchester Primary Care Patient Safety Translational Research Centre, and supported by the Information Commissioner’s Office.

Citizens Jury 2016

Should health records be re-used for health research? The public debate

The two juries tackled the same “jury mission”, specific questions that the jury must answer as a group. Each individual also completed a start-of-jury questionnaire, and an end-of-jury questionnaire on their views about these questions. The three-day process was facilitated by Kyle Bozentko, a director of the Jefferson Center in the USA, and Amanda Hunn from the Health Research Authority. Jurors heard presentations from, and were able to ask questions of, five expert witnesses. To protect against bias, the jury design and other materials were reviewed by an independent oversight panel.More information, including the jury findings, will be published in March 2016.

 

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 mission and juror selection criteria Yes Download
A.2 Research Ethics application A copy of the University of Manchester approved research ethics application, including the consent form completed by participants (i.e. the jurors) No Download
A.3 Expert witnesses brief A brief provided to all five expert witnesses to guide their presentations to the juries. Yes Download
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 Download
A.5 Oversight Panel signed questionnaires The set of three forms completed and signed by the three members of the oversight panel with their statements on bias. Yes Download
A.6 Jury recruitment questionnaire The paper form completed by people applying to be jurors (an electronic equivalent was used for web applications) Yes Download
A.7 Jury 1 and 2 demographics A breakdown of the demographics of the 17 people who completed jury 1 and the 17 who completed jury 2, plus their responses to a question used in recruitment asking applicants to balance privacy and information sharing for public benefit. No (just the target ranges were reviewed as part of the jury design specification) Download
A.8 Start-of-jury questionnaire The questionnaire that all jurors completed at the start of day 1 of the jury process. Yes Download
A.9 End-of-jury questionnaire The questionnaire that all jurors completed at the end of day 3 of the jury process. Yes Download
A.10 Jury event details Details sent to jurors shortly before the juries began Yes Download
A.11 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 and day 2. No (standard Jefferson Center form) Download


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Jury Materials

No   Name   Brief description   Reviewed by Oversight Panel   File for download
B.1 Jury Schedule Planned schedule for the three day juries produced by Larry Pennings of the Jefferson Center No Download
B.2 Moderator Manual Detailed plan and materials used by the facilitators over the 3-day jury, designed by Larry Pennings of the Jefferson Center No Download
B.3 Simulation exercise A simulation exercise developed by the Jefferson Center and carried out by jurors in groups on day one. The topic is not directly related to the jury mission, but an exercise to practice effective group working on a policy problem. No (Jefferson Center material) Download
B.4 Crib sheets Sheets designed originally by Malcolm Oswald, and modified by Larry Pennings of the Jefferson Center, for use in group work on day 3 to help inform the jury to reach conclusions on question two of their mission/charge. Yes Download
B.5 Ralph Sullivan slides The presentation slides developed and used by Dr Ralph Sullivan, general practitioner and health informatician, the impartial expert witness who was briefed to inform the juries about patient records. Yes Download
B.6 Dawn Monaghan slides The presentation slides developed and used by Dawn Monaghan of the Information Commissioner’s Office, the impartial expert witness who was briefed to inform the juries about relevant law. Yes Download
B.7 John Ainsworth slides The presentation slides developed and used by Dr John Ainsworth, a health researcher at the University of Manchester, the partial expert witness who was briefed to present arguments for using patient records for uses such as research. No (because he was a partial witness, it was not relevant to review for bias) Download
B.8 Sam Smith slides The presentation slides used by Sam Smith of medConfidential, the partial expert witness who was briefed to present arguments for protecting patient records, and providing patients with control over those records. No (because he was a partial witness, it was not relevant to review for bias) Download
B.9 Soren Holm slides The presentation slides used by Soren Holm, Professor of Bioethics at the University of Manchester, who was briefed to present ethical arguments for and against the use of patient records for uses such as research. Yes Download

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Jury Outputs

No   Name   Brief description   File for download
C.1 Jury 1 report Report of jury 1 conclusions produced by Kyle Bozentko on day 3 of jury 1 with the 17 jurors Download
C.2 Jury 2 report Report of jury 2 conclusions produced by Kyle Bozentko on day 3 of jury 2 with the 17 jurors Download
C.3 Citizens’ Jury booklet  A report summarising the design and findings of the two citizens’ juries; it was printed as a colour booklet and distributed at the 10 March 2016 post-jury workshop.  Download
C.4 Analysis of questionnaire results The results of the data analysis of the start-of-jury and end-of-jury questionnaires carried out by Dr Sarah Clement (of the Information Commissioner’s Office).  Download Jury 1/Jury 2
C.5 Daily participant feedback form results Results of Jefferson Center evaluation forms designed to capture juror concerns, especially about bias, during day 1 and day 2 of the juries. Download

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10 March 2016 post-jury workshop

On 10 March 2016, the University of Manchester and the Information Commissioners’ Office organised a joint workshop for decision makers from national health and social care organisations to hear, and then discuss, the results of the two citizens’ juries and other connected research. Workshop participants, including 10 citizen jurors, heard from four speakers:

  • Christopher Graham, Information Commissioner, explaining the strategic shift in the Information Commissioner’s Office towards identifying, and addressing, the needs of data subjects;
  • Dame Fiona Caldicott , National Data Guardian, on trust and giving patients choice in how patient records are used;
  • Dr Malcolm Oswald, Honorary Research Fellow at the University of Manchester, along with two participants from two citizens’ juries, describing the process and outcomes of two three-day citizens’ juries held in January 2016 to explore the extent to which patents should control access to patient records; and
  • Dr Natalie Banner, Wellcome Trust Policy Officer, with findings from research into public attitudes around commercial access to health, biomedical and genetic data.
No   Name   Brief description   Reviewed by Oversight Panel   File for download
D.1 Agenda Agenda and speakers for 10 March workshop in Stockport to cover, amongst other things, implications from citizens’ juries for policy and practice N/A  Download
D.2 Workshop attendees A list of people who participated in the workshop. N/A  Download
D.3 Workshop notes Brief notes of the workshop. N/A  Download
D.4 Dame Fiona slides The slides presented by Dame Fiona Caldicott, National Data Guardian, at the workshop. N/A  Download
D.5 Natalie Bennett slides The slides presented by Dr Natalie Banner at the workshop about the recent Wellcome Trust research into commercial uses of patient data. N/A  Download
D.6 Citizens’ Jury slides The slides presented at the workshop about the citizens’ juries by Dr Malcolm Oswald of the University of Manchester, and Francesca Costello and Paul Walton who took part in the juries. N/A  Download
D.7 Interactive exercise results The results of the online voting by participants during the morning interactive session of the workshop N/A  Download
D.8 Group work results The outputs from the group work in the afternoon of the workshop. N/A  Download

 

interactive group discussion at workshop

Interactive group session


Notes:

  1. Other than where specified, the main author of the documentation above was Malcolm Oswald, Honorary Research Fellow in Law at the University of Manchester. Reviewers varied depending on the nature of the document.
  2. The Oversight Panel brief was to review jury design documentation, and jury materials, but not the jury outputs or materials for 10 March 2016 workshop.

For further enquries please contact Malcolm Oswald at malcolm.oswald@manchester.ac.uk