The perils of data sharing within the NHS

medical_date07:47 Thursday 19th March 2015
BBC Radio Cambridgeshire

CHRIS MANN: The Cambridge Science Festival is continuing this week, closing on Sunday. Today we’re looking at the security of our health records ahead of an event on that final day. And I’m joined by Dr Lydia Drumright who is from the University. Hello there.
LYDIA DRUMRIGHT: Good morning Chris.
CHRIS MANN: A hugely successful Science Festival, lots of variety in it. And indeed this is quite a different subject from the rest. What are your concerns about health data?
LYDIA DRUMRIGHT: Well I work in health data and processing health data as a university lecturer in clinical informatics. And I’m concerned both with the ability for us to use those data to advance care, but also the protection of patients’ privacy, and the appropriate use of such data.
CHRIS MANN: Why would you be concerned that its use is not appropriate?
LYDIA DRUMRIGHT: Well I think we have not seen anything where the use isn’t appropriate. However we did have the experience with care.data that raised concerns. I think actually in the end that was good, because we have governmental agencies and other folks focusing on making sure we use data appropriately.
CHRIS MANN: Of course quite a lot of controversy at the start of this year, Addenbrookes Hospital became the first in Britain to adopt this new e-hospital system. Just explain to people what that means.
LYDIA DRUMRIGHT: So the e-hospital system is quite different than some of the other hospital systems. Everyone has electronic pieces in their system, but this is joined up care, and what that means is there are no more paper notes. So a health care worker who’s looking after a patient, say a doctor, has every bit of information they need on that patient at the time they’re looking after that patient. What that does is create safer care, where the doctor can more rapidly process the information.
CHRIS MANN: As long as the technology is working, it has to be said. We work in a very technological environment, as you can see. Lots of screens here and computers, and whisper it, it does go wrong sometimes.
LYDIA DRUMRIGHT: That is true, and we have backup systems in place. That was very critical in putting the system in place, that we would have the ability to have backup systems, and be able to view those records at all times.
CHRIS MANN: Of course there’s a fear that however records are kept, whether it’s on paper in files or as we’ve said electronically, digitally, there’s a fear that they will go missing or be misused. Now is it a case that when there was a paper trail so to speak, that our medical records were sold on or seen by people that shouldn’t have been?
LYDIA DRUMRIGHT: I think that we take in the NHS very seriously the protection of data, and there are very serious laws in the UK about the protection of data. So I think both in electronic medical records and in paper medical records, we don’t have this problem where we are releasing those data, because there are actual prison sentences behind that.
CHRIS MANN: But don’t hospitals sell on information about people to drugs companies?
LYDIA DRUMRIGHT: No that is not going on.
CHRIS MANN: Does it happen elsewhere then?
LYDIA DRUMRIGHT: Well I come from the US obviously.
CHRIS MANN: We can tell. Yes. (THEY LAUGH)
LYDIA DRUMRIGHT: You can tell.
CHRIS MANN: It happens there, doesn’t it?
LYDIA DRUMRIGHT: Well in the US we didn’t have as strong data protection laws as they do in the UK. That’s historic. We actually followed the UK and created more intensive data protection laws. But no, there wasn’t a problem with selling information onto other organisations for the most part. You may find a rare situation, but oftentimes those people are then punished.
CHRIS MANN: OK. Because we know over the last ten years, probably more, how important, how valuable telephone numbers are, addresses. Heaven knows we all get plagued don’t we by people we don’t want to hear from quite frankly. So is there no chance that a medical company or a research company will find out anything about us?
LYDIA DRUMRIGHT: So what happens in research and in medical research in particular, if you do join a research study, so that is by consent, you are invited, then actually if a clinical trials company, a pharmaceutical company is working with the doctor that you see, then your information will be made available to them. But that’s made clear to you. And that’s for the purposes of audit only. They will not be contacting you individually outside of your care team.
CHRIS MANN: Well you’re going to tell me now I’m sure that actually sharing your data is beneficial, because it allows research based on big numbers.
LYDIA DRUMRIGHT: Well it’s incredibly beneficial. That’s right. It allows research based on big numbers, but more important to that we don’t actually always know, although people like to think we do, what the best way to care for patients is, what are the risk factors, who we should be testing, who we should be treating, and in what way. And we can use medical records such as electronic records to advance care. And that’s what we’re really interested in doing. The other thing we can do is provide the health care workers with better tools to provide better safer care. So we can put safety nets in to the system, and that will really help. But in order to do that, we need to be able to process those data.
CHRIS MANN: OK. Your event is on Sunday, which is the last day of the Science Festival. It’s at the Cambridge Institute. It’s event 269 if people want to see it, organised by the Cambridge Institute of Public Health. The Perils of Data Sharing – hands off my health records – why sharing your health data matters. And you’re basically assuring all of us, aren’t you, that we’re going to be fine?
LYDIA DRUMRIGHT: I think you will be fine in what we’re planning to do. And I think that the Government and the whole community is heightened to the need to make sure that people feel safe in our use of data, and advancing medicine with it.
CHRIS MANN: Dr Lydia Drumright. Thank you so much for joining us.
LYDIA DRUMRIGHT: Thank you.
CHRIS MANN: Appreciate that.

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