Health Service Focus

Whose information is it anyway?

Kate Ashley reports from a fringe event at the Conservative Party Conference, hosted by 2020health, on the thorny questions around electronic medical records.

At the Conservative Party Conference this year, 2020health held a fringe event on electronic medical records. Chief executive Julia Manning (who sits on NHE’s editorial board) chaired the panel, with Dr Sarah Wollaston MP; Nick Pickles, director of Big Brother Watch; David Davis MP; and Dr Mohammad Al-Ubaydli, founder and CEO of Patients Know Best.

NHE attended the event, which considered the pitfalls and opportunities around paperless records, including some important ethical considerations and a general consensus that this was not a move which should be rushed, or enacted without the patient.

‘A huge opportunity’

Dr Wollaston, MP for Totnes, kicked off the debate, warning that patient notes could include other people’s notes within your notes, over-recording, duplication, inaccuracies, and even pejorative remarks.

She said: “We need to move away from the paternalistic attitude that we’ve taken in the past; somebody else controlling your records and correcting inaccuracies. You’re the person who has the greatest interest in making sure it’s accurate, and you’re most likely to be able to point that out. It should be the norm that you have access to your records – and that you get to decide who else gets to see them.”

Dr Wollaston warned against the ‘conspiracy’ idea of multi-national drug companies waiting to use people’s data for nefarious ends, but said it was a “crucial point” that the individual has the right to opt out of sharing their records. On the topic of drugs trials, she added: “The ability to follow large numbers of patients and see what happens with their data – there’s huge potential and we need to get away from the idea that this is some kind of conspiracy and see it as an opportunity.”

Between risk-averse and risking trust

Pickles cautioned that the debate had, at times, been “massively oversimplified.”

It was more nuanced than two extremes – one of completely open data, and the other where even your GP must ask permission for access – and more important, he said.

Traditionally, the NHS has had “a reticence to share information”, which in itself can be harmful. Paperless records offer a “new opportunity to address a real over-cautious, risk-averse approach to data protection”.

But rushing ahead to implement paperless records could be a costly mistake, he said, with a huge increase in incidents around confidential information.

“We risk trust in the health service and in medical record integrity if we don’t get consent right, if we don’t bring patients with the experience and the change rather than just assuming they won’t mind.”

Anonymous?

The best check for privacy would be to give patients the ability to see who has looked at their records, which records, and why: “If we don’t have that data protection, everything else is like window dressing.”

Another issue was that the promise of anonymity was a “growing myth”. The distinction between anonymisation and de-identification was a very important one, as was the point that re-identifying information using other data sources is not currently covered by the Data Protection Act – something Pickles called on the government to address.

“The consequences of getting this wrong could be a real fundamental threat to trust in public health. I don’t think we can afford to rush.”

Without bells and whistles

Davis spoke next, agreeing that electronic records offered a “huge opportunity” for advances in treatment, but said: “The difficulty is how do you do it safely? We have this clash between this enormous public good and this threat to privacy.”

The Department of Health has “never yet had a successful IT project,” he joked, pointing out that trying to go too far, too fast with “bells and whistles” on this programme could be risky. “It’s important to focus very closely on what we’re trying to do.”

Davis echoed Pickle’s contention that ‘anonymous’ is not the same as impossible to find, and stricter controls would be necessary to protect people’s privacy. He said: “People who break the law on this should go to prison. We do not treat IT crime as we should – it can be a great force for good or a great force for bad; it’s how we manage it.”

Patients know best

Dr Mohammed said that many patients would be willing to share data, but that it is essential to ask their permission first.

“We start from the idea that patients do know best – the easiest way to share this information across the system is to give it to the patient because the patient goes to different places; make the data follow them.”

In the example of children’s records, giving these to the family is often better for the child’s care and can significantly reduce costs as well as stress, he said.

Patients can know things about their conditions that new doctors may not be aware of, Dr Mohammed explained. “All of these benefits can happen if you put patients in control of the data.”

But we have to ensure that the NHS will do something useful with electronic records to add value, rather than just implementing them for the sake of it, he concluded.