United Kingdom looks to put 50 million health records online and increase patient data rights

This Monday, Minister of Parliament Jeremy Hunt, the United Kingdom’s Secretary of State for Health, delivered a keynote address at the fourth annual Health Datapolooza in Washington, DC. In a rhetorical turn that would be anathema for any national conservative politician on this side of the Atlantic, Hunt commended the United States for taking steps towards providing universal health insurance to its people.

Hunt outlined three major elements in a strategy to improve health care in the UK: 1) applying data more effectively 2) improving transactional capabilities and 3) putting patients in the “driver’s seat” of their own health care. He pointed to several initiatives that support that strategy, from extending electronic health records to 50 million people to sequencing the genomes of 100,000 people and developing telemedicine capabilities for 3 million patients. Given the focus of the datapalooza, however, perhaps his most interesting statement came with respect to personal data ownership:

After the keynote, I interviewed Secretary Hunt and Tim Kelsey, the first national director for patients and information in the National Health Service. Our discussion, lightly edited, follows.

What substantive steps has the UK taken to actually putting health data in the hands of patients?

Hunt: Basically, I have given an instruction that everyone should be able to access their own health record online before the next general election, which means that I will be accountable for delivering that promise. There’s no wiggle room for me. That’s a big change, and it’s also a big change for the system because, basically, it means that every hospital and every general practitioner has to get used to the idea that the data they write about patients will be able to be accessed by patients. It’s a small but very significant first step.

There’s sometimes a disconnect between what politicians direct and what systems actually do. What’s happening with the UK’s long-delayed EHR system?

Hunt: I’ve given a pretty accountable timeframe for this: May 2015. I’ll be facing a general election campaign then. If we don’t deliver, then my head’s going to be on the block. I think it is a valid question, because of course once you set these objectives, then you start to look underneath it. One of the questions that we have to ask ourselves is how many have actually used this. We want everyone to be able to use this, but in practice, if the way they use it is they’re going to have to go into their GP, they’ve got to sign a consent form, there’s some complex procedure, then actually it’s not going to change people’s lives. The next question is about take-up, and that’s what we’re exploring at the moment.

Are there any aspects of the U.S. healthcare system that you think might be worth adopting and bringing back to the U.K.? Or vice versa?

Well, it’s quite interesting. We just had a really good meeting with [US CTO] Todd Park. I don’t think the differences are so great. I mean, on one level, yes, hospitals here are private or charitable, so they can’t be mandated by the government to do anything. And yet, they’ve succeeded in getting 80% of them to adopt EHRs through setting a standard and a certain amount of financial incentive. We can tell our hospitals to do things, but actually, as you said earlier, that’s not the same as them actually doing it.

I think in the end, in both countries, what you have to do is make it so that it’s in the hospitals’ own interest. In our case, the way that we’re doing that is trying to demonstrate that sensibly embracing the technology agenda has a massive effect on reducing mortality rates and improving clinical outcomes. By publishing all of the data about those outcomes, we’re creating competition between hospitals. That, I hope, will drive this agenda.

At the same time, we need to change public awareness. This is the big challenge – this sense that you can actually be in charge of your own health is just, surprisingly, absent in large numbers of people. There’s a very strong sense that lots of people have that “health is something that’s done to me” by NHS.

In the U.S has released data on the disparities in pricing for hospital procedures and comparisons of hospital quality — but you still need to go to places that take your health insurance. In the NHS, is that as much of an issue?

Hunt: That’s a really good question to ask because, in the U.K, for virtually any procedure, you have the right to have it done in any hospital in the country — and yet, very few people avail themselves of that right. So, by publishing surgical survival rates, we’re hoping to create pressure, where people actually say “I’m going to have this heart operation, and I’m not going to go to my local hospital, I’m going to go to this one a bit farther away that has higher success rates.” At the moment, people don’t actually do that; they tend to go where they’re recommended to. That’s where this information revolution can take hold.

What is the most unexpected thing that has happened since the U.K. began releasing more open data about health?

Tim Kelsey: I don’t know if this is unexpected or not, but the most startling thing is that we’ve moved from having one of the worst heart surgery survival rates in Europe to being the best. Heart surgery is the only speciality where we’ve published comparative data by heart surgeons across the whole country.

Do you think that’s an accident?

Tim Kelsey: No, I don’t think it’s an accident at all. Within that data, if you look at what has actually happened, the assumption of the geniuses who actually pioneered the program was that the gap between the best surgeons and the worst surgeons would narrow, because the weaker surgeons would raise their game. That didn’t happen. What happened was that the best surgeons got even better, and the underperforming surgeons also raised their game. The truth is that they want to be the winner, and open data has had a massive impact in driving outcomes and standards.

What are the most important principles or substantive steps that you’re applying at the NHS to mitigate risks or harms from privacy breaches?

Hunt: We have to carry the public with us. We have a very strong free press, as you do, and we’re very proud of that. If they believe that people’s data is going to be used to infringe their privacy, then public confidence in the huge revolution that the dataaplooza is all about will be shaken and lack a massive impact. I think that there’s a very simple way that you maintain public confidence, which is by making it absolutely clear that you own that data. You can choose, if you don’t want that data to be used, in even in an anonymized form, you can say I’m not going to share my data. I think once you do that, you create a discipline in the system to make sure that the anonymization of data is credible, because people can withdraw their consent if they don’t believe it.

Also, you put people in the driver’s seat, because I think people’s motives are different. You and I, as young and hopefully healthful individuals, we’re thinking about privacy. If somebody’s got terrible cancer, he’s actually thinking, ‘well, I would really like my data to be used for the benefit of humanity.’ They’re actually very, very happy to have their data shared. They have a different set of concerns.

I don’t think you’ll have any trouble, for example, getting 100,000 people to consent to have their genome sequenced. These will be people who have cancer, and once you have cancer, you think, ‘what can I do to help future generations conquer cancer?’ The mentality changes. We have to maintain people’s confidence.

I think the best analogy, though, is banking. Perhaps the second thing people care about most after their health is their money, and the banks have been able to maintain people’s confidence. They’re actually doing banking online, so that you can access your bank account from any PC, anywhere in the world. It’s something you can do with confidence. They’ve done that because they’ve thought through the procedures.

In the U.S., you’re entitled to access a free copy of your credit report once a year. Consumers, however, still don’t have access to their own data across much of the private sector. Will the British government support “rights to data for its citizens?”

Hunt:: We are hoping to preempt the worry about that by instructing the NHS that everyone has a right of veto over the use of their own data. You own your own medical record. If you don’t want that shared, then that’s your decision, and you’re able to do that. If we didn’t do that, I think the courts might make us do that.

Kelsey: Just to clarify that point: The Data Protection Act, which is effectively a European piece of legislation, says that people have the right to object to data being shared, in any context, private sector or health or otherwise, or to opt out. We’ve said, because of the rights priority we’re giving to patients as the de facto owner of the data, which is different from the American situation so far.

We’re setting a global standard here, which will be interesting experiment for the rest of the world to watch, that people will have the right to say “I don’t want my data shared” — and people will respect that. Now, at the moment that is not a legal right, that is a de facto right that will be expected. It may well be that we’ll need to simply write down a law that this is an individual’s data and rights flow from that. At the moment, there’s no law that gives an individual patient the right to their own data nor to opt out out of its sharing.

One thought on “United Kingdom looks to put 50 million health records online and increase patient data rights

  1. Additional information that was not reported at this session is that the UK, as part of US:European initiatives on health information as its use has participated in an EU:US Memorandum of Understanding and a Roadmap on what to do in next 5 years collaboratively. The UK has a number of health informaticians working on the interoperability challenges and the UK Council for Health Informatics Professions is leading under the aegis of EuroREC on the workforce issues. The lead players overall are Moshtashari and Freidman (US) and Zilgalvis (EU). A recent mtg in Dublin during eHealth week had a number of sessions on taking the Roadmap forward synergistically.
    Jean Roberts Director(Standards) UKCHIP and member of EU eHealth Stakeholder Group

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