HTN Article: “A large-scale public engagement report commissioned by NHSE on building and maintaining public trust in data use across health and care has been published, focusing on the approach to creating a single patient record and the secondary use of GP data.
It noted “relief” and “enthusiasm” from participants around not having to repeat their health history when interacting with different parts of the health and care system, and highlighted concerns about data accuracy, privacy, and security.
120 participants were recruited for tier one, with 98 remaining by the end, for 15 hours of deliberation over three days in locations including Liverpool, Leicester, Portsmouth, and South London. Inclusive engagement for tier two recruited 76 people from “seldom heard groups” such as those with health needs or socially marginalised groups for interviews and small group sessions. A nationally representative ten-minute online survey with 2,000 people was also carried out in tier three.
“To start with, the concept of a single patient record was met with relief and enthusiasm across Tier 1 and Tier 2 participants,” according to the report….
When it comes to GP data, participants were “largely unaware” of secondary uses, but initially expressed comfort in the idea of it being used for saving lives, improving care, prevention, and efficiency in delivery of services. Concerns were broadly similar to those about the single patient record: concerns about data breaches, incorrect data, misuse, sensitivity of data being shared, bias against individuals, and the potential for re-identification. Some participants felt GP data should be treated differently because “it is likely to contain more intimate information”, offering greater risk to the individual patient if data were to be misused. Others felt it should be included alongside secondary care data to ensure a “comprehensive dataset”.
Participants were “reassured” overall by safeguards in place such as de-identification, staff training in data handling and security, and data regulation such as GDPR and the Data Protection Act. “There was a widespread feeling among Tier 1 and Tier 2 participants that the current model of the GP being the data controller for both direct care and secondary uses placed too much of a burden on GPs when it came to how data is used for secondary purposes,” findings show. “They wanted to see a new model which would allow for greater consistency of approach, transparency, and accountability.” Tier one participants suggested this could be a move to national or regional decision-making on secondary use. Tier three participants who only engaged with the topic online were “more resistant” to moving away from GPs as sole data controllers, with the report stating: “This greater reluctance to change demonstrates the need for careful communication with the public about this topic as changes are made, and continued involvement of the public.”..(More)”.