Lydia Drumright argues for a more accurate common language will help boost public trust
‘Data ownership’ is a ‘problematic’ concept – Photo credit: Pixabay
The concept of ‘data ownership’ is “really problematic” for the healthcare sector and people should make an effort to stop using it, a leading academic from the University of Cambridge has said.
Speaking at a workshop organised by the industry group TechUK at the AI Summit yesterday, Lydia Drumright, a lecturer in clinical informatics, said that there “is no such thing as a data owner”.
Drumright said that, while there are data guardians or data controllers, the idea that someone can own health data creates “a big problem” for the field because in reality it involves more complex ethical and legal issues.
“Data that are about you are generally not collected by you or held by you,” she said. “My care record is about me, but actually that sits with whoever collected it.
“It’s not information that I generated; it’s a doctor’s perception of me. If I see [my doctor] and he makes an assessment of me, is the data his or mine?”
She went on to say that the data is created as part of a “transaction”, and that nobody can own data generated in that way, emphasising that the more important issue was that organisations and individuals have to “protect that transaction”.
Drumright urged people to “stop using ‘data ownership’ from now on” and work on creating a common language that involved all stakeholders.
She also stressed the need to involve “all of society” in discussions about the use of health and patient data, and the importance of working to build up public trust.
The government, she said, “is not popular today”, adding that the controversial Care.data patient information sharing scheme was “causing a huge and painful burn in this space”.
The scheme collapsed after of a poor public communications programme and a failure to clarify how data would be used or how people could opt-out, and was scrapped in July last year.
Civil service chief executive John Manzoni has also acknowledged the lasting damage that the scheme had done, previously describing it as a “misstep” that had put efforts to improve data sharing across the health service “back a long way”.
Drumright said that the key to getting public support for the greater use of patient data – whether by government, industry or researchers – was to demonstrate transparency and an interest in the public’s concerns.
“We don’t need better public announcements,” she said. “We need to close our mouths and listen to people.”