The project included patients and staff from University Hospitals Birmingham NHS Foundation Trust (UHB), one of the largest NHS Trusts in England, with 2750 beds, more than 22,000 staff, a fully EHR (Prescribing Information and Communication System) and a shared primary and secondary care record (Your Care Connected). Members of the public were recruited from public stands and public involvement groups across the West Midlands. For more details of participant recruitment and questionnaire delivery see the online supplement and the individual activities, below.

The project included six activities, running between February 2019 and July 2020, as shown in Table 1.

The structure of patient and public activity

1. Introduction to health data and electronic health records

2. Health data research (benefits and challenges)

3. Models of data use (Consent versus unconsented, National Data Opt-Out, broad access for hypothesis generating, limited access and the 5 safes)

4. Free discussion – what do attendees think are important considerations in health data use

1. Understand what is meant by health data and how it is stored for primary use

2. Introduce secondary use of health data, de-identification, NHSE opt out and examples of use of health data

3. Agree a list of main concerns about health data use

4. Agree on a list of important themes to be considered in health data use

1. Introduction to health data and electronic health records

2. Health data research (benefits and challenges)

3. Models of data use (Consent versus unconsented, National Data Opt-Out, broad access for hypothesis generating, limited access and the 5 safes)

4. Workshop breakout groups and feedback to all

 a. Key considerations to using patient data

 b. What processes should guide the use of patient data

 c. The use of sensitive data

1. Understand what is meant by health data and how it is stored for primary use

2. Consider examples of how patient data has improved patient care but also risks and challenges

3. Agree a list of main concerns about health data use

4. Agree on a list of important themes to be considered in health data use

Public members and patients were involved in all stages of the design, delivery, analysis and dissemination of this work.

Participants in the workshops and questionnaire respondents were told that the purpose of the project was to support the development of working practices for PIONEER. Interpreters were used as required.

An open workshop was held with patients of UHB. To be considered a “patient” for this workshop, participants had to self-declare that they had been admitted to UHB hospital within the past year and were members of a patient support group. There were no other inclusion or exclusion criteria. The workshop lasted 4 h with a scribe to take notes. Identified themes were then approved by attendees.

To be considered a “public member” for this workshop, participants had to self-declare that they had not been admitted to UHB or any other hospital within the past year. People were asked to self-report their area of residence, age, gender, ethnicity, whether they had been a patient at UHB any other hospital outside of the last 12 months and whether they were a care-giver to people with health challenges (or could choose not report any of these groupings). There were no other inclusion or exclusion criteria. The workshop lasted 4 h with whole group discussion and smaller break out groups. The workshop and break-out groups were audio-recorded with a scribe to take notes. Themes and action points were recorded and then approved by attendees.

A short questionnaire was developed by patient/public members and the PIONEER Health Data Research Hub team. See Table S1 of the online supplement for the questions asked. Verbal consent was given by all participants and where children under the age of 18 were approached, their parent, legal guardian or responsible adult provided verbal consent. Participants were asked to self-report their age group, ethnicity, gender, and to place themselves into one of six groups (patient, care-giver, visitor to hospital, NHS staff, NHS volunteer, public member) or they could choose not to report any of these groupings.

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