FOIMan is concerned that legitimate questions and concerns about data sharing are too often dismissed by those in a rush to exploit big data. And explains that this is nothing new.
Years ago I worked for a hospital NHS Trust. Soon after I started, I was invited to a meeting with local police, council officers, a representative from the Department of Health and a manager from our own A&E department. The meeting was to discuss sharing A&E data with the police and local council.
This was part of a national programme sponsored by the Home Office. Academic research had found that where police had access to certain A&E data, crime – and particularly violent crime – dropped as they could target hotspots. A&E admissions also dropped. So win-win. The Home Office was obviously very interested in this and was pushing for all hospitals with an A&E department to share data in this way.
I was new to the job, and to data sharing, so I needed to know a few things. One of the key questions any DP Officer worth their salt needs to know in this situation is what legal power they have to share the data. So I asked, and nobody knew (which was interesting in itself, given this was supposedly a national project). They said they’d ask the doctor who’d done the original research to contact me and let me know.
So one afternoon I received a call from him. Initially he was very pleasant but he didn’t actually tell me what I needed to know. When I pushed him on this, his response was to angrily tell me that people were dying because I was delaying the project.
Eventually (and with no thanks to the researcher or the Home Office) I reached agreement with the community team. We would share some of the data they wanted (but not all), and the agreement stated that the police were not allowed to put the data together with their own to enable reidentification of individuals who may have been in contact with both organisations.
There seems to be an attitude from NHS England at the moment that is reminiscent of this episode. Reasonable questions about safeguards are being dismissed. Rational concerns about privacy are portrayed as preventing progress. I’m not someone who is blind to the benefits of care.data or other big data projects. But I want them to be handled properly and to have confidence in those looking after the data.
When concerns like these are dismissed as time-wasting or a failure to understand, it bothers me. And I suspect it bothers lots of other people too, whatever their views on the benefits of the individual project. It feels high-handed, as though the medical establishment doesn’t really care about the views or privacy of the public as long as they get their precious data. I’m sure that isn’t the case, but a continued failure to acknowledge legitimate concerns allows this impression to grow.
Photograph by D-G-Seamon [CC-BY-SA-2.0 (http://creativecommons.org/licenses/by-sa/2.0)], via Wikimedia Commons