Foundations of Fairness: NHS Data Sharing

Members of existing Public Patient Involvement groups in London, Oxford and Manchester were brought together for roundtable meetings to support the design of stimulus materials for subsequent citizen’s juries, and to test questions that would be used in the Jury component.

“This was an essential part of the Jury design process in that HVM and the commissioning partners could work with patients who are already familiar with the complex NHS data landscape to frame the Citizens Jury materials, identify key themes and issues and ensure the language used in the case studies and handouts was in Plain English, clear and fit for purpose.”

There were 30 participants from a target group of members of existing Public Patient Involvement (PPI) groups (Intentional recruitment).

Three non-residential citizen jury events were held in Taunton, Leeds and London, each one taking place over a weekend (Friday evening to Sunday), with participants given a £250 incentive payment for attending throughout.

The juries were presented with stimulus materials, heard from expert witnesses, and discussed a range of questions around NHS data sharing partnerships. Each Jury developed its own recommendations which are reported in their own words in the full project report, and which been synthesised by the research team into a summary report of recommendations.

There were 54 participants from a target group of a demographically representative sample of the English population (Intentional recruitment).

Participants were recruited through street and panel approaches working with a recruitment partner. Participants were screened to get a jury reflecting demographics of the English population. Recruitment took place in urban and rural areas..

Background information was given through expert presentations and video presentations (online or in-person).

“Jurors were also introduced very clearly to the subject of data access partnerships by Natalie Banner of Understanding Patient Data or Reema Patel of the Ada Lovelace Institute, a scene setting presentation setting out the purpose of the Citizens’ Juries. In addition Gary Cook from OLS was presented in a short filmed statement to jurors. These three elements made it clear to jurors that they were not deliberating on whether or not data access partnerships should exist, but rather, given that they do exist, how they should be operate fairly for all concerned. The facilitation team made it clear that the focus is on data collected routinely as part of every patients’ care and interactions with the NHS in line with the useful Spectrum of identifiability developed by Understanding Patient Data.”

Expert witnesses presented to the Jury.

A survey, hosted by an existing online platform with a standing panel of over 600,000 members, was used to gather a demographically screened sample of views, in response to a survey developed based on Citizens’ Jury findings, and input from the Oversight Group.

The survey covered:

• People’s awareness of data access partnerships
• Where they would expect to find information on them
• Levels of interest in data access partnerships
• The extent to which citizens should be involved in the decisions about how data access partnerships work
• Where the benefits of the data access partnerships should be focused.