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Table 1 The structure of patient and public activity

From: Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff

Activity Agenda Objectives Participants
1. Patient workshop 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
Patients who had recently been admitted to UHB
2. Public workshop 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 from advertisements placed on social media and UHB public forum
3. Co-creation of questionnaire Create and test a simple questionnaire to assess knowledge of NHS opt out, and knowledge and perception of health data use. Patient and public members of PIONEER
4. Delivery of questionnaire Delivery of questionnaire to patients, carers, NHS staff and public members including children aged 13 and over UHB patients, carers and staff. Public members from West Midlands
5. Feedback of questionnaire Feedback of results of questionnaire to patient working group and public workshop Assess if wider public consultation reflected the group’s thoughts and where differences were present, why these might be present Patients and public members in two different sessions