Shared Goals and Concerns from Across the Pond

I read and hear a lot about scaling culture. For the open data movement in healthcare to make a difference, the culture that needs to scale looks like this: the government and private health care organizations make certain types of health data public, developers come up with tools that make sense of data, patients proactively seek health information, and physicians work with informed patients to make health care decisions.

Earlier this month at the Health Data Initiative Forum III in Washington, D.C., I went to a panel discussion called Open Health Data in the United Kingdom. I was expecting to hear the ways that U.K. culture influences attitudes toward the open health data movement and how those attitudes are different from the ones we have here. Instead, while U.K. National Health Service representatives summed up their open data goals and challenges, I didn’t hear many dissimilarities compared to what’s going on in the U.S.

This year the United Kingdom passed The Health and Social Care Act, a huge piece of legislation that will restructure the NHS. To simplify, Mark Davies, medical director of the NHS Health and Social Care Information Centre, explained parts of the act that matter in the context of open health data.

“There is a very clear direction of travel within the act to decentralize power to make providers much more accountable to their local communities and to make commissioners very much answerable to populations that they serve,” Davies said.

Accountability is an important theme that runs through both the U.K.’s and U.S.’s reform efforts. Providers from both nations are going to be evaluated according to quality metrics. In the U.S., doctor reimbursements will begin to be tied to those metrics. The transition is going to be tough on doctors, but that’s where scaling culture around health IT can alleviate the pain. The movement aims to make patients smarter when it comes to their wellness and health care decisions. In effect, patients can help their doctors take better care of them.

Davies said there are four ways the NHS works on promoting open data and transparency. First, it gives patients access to their personal health data. Second, it makes data on quality of care and outcomes public. Third, it gives patients access to a diverse health community, and last, it connects them to communities of people with the same health conditions.

Sounds familiar. Here’s more that’s familiar and is in touch with the reality of today’s culture:

“For many people, it’s seen simply as a political gimmick,” Medical Director of the NHS Sir Bruce Keogh said. “They think this is about Stalinist performance measures ― that way people are going to keep an eye on us, particularly in a kind of bureaucratic and tax-funded system.”

Others are critical of the kind of information that the government’s publishing and think that patients aren’t going to know what to do with it. They argue that the data is either useless or can actually cause patients harm if they misinterpret it.

“If you bombard patients with information out of context, it becomes meaningless. The simplistic production of information may lead to patients potentially being misled by the lay press …” General Practices Committee Deputy chairperson Richard Vautrey said in a Pulse article.

But that doesn’t stop people from looking up health information on the Internet. The NHS runs a health information website called NHS Choices that gets about fifteen million visits per month. That’s about 60% more than Trip Advisor gets worldwide, Keogh said.

Keogh is a former cardiac surgeon. He said that by the time he left clinical practice, about half of his patients were walking into his office with health information they had gotten from the Internet.

“What it leads to is much more focused and sensible and meaningful conversation with your patients that helps them, in my view, and makes your life much easier. It’s helped me as a surgeon to learn where their real fears lie and where their anxieties lie,” Keogh said.

After an hour long discussion I picked up on one major difference between the U.K.’s concerns and ours. They are extremely worried about the impact that the European financial crisis will have on their ability to provide health care. Though it’s not in the Eurozone, the U.K. is feeling squeezed by the economic downturn, and Davies said that will set the stage for the next generation, which will deal with problems providing access to care.

But the U.S. economy also isn’t in good shape, and at almost 18% of GDP, everyone agrees health care spending is unsustainably high.

Which brings up another underlying similarity: both nations’ leaders are optimistic about the potential of open health data and health IT. While the impacts of reform, economic troubles and a host of other factors will continue to shape health care beyond anyone’s control, the government, providers and patients can help scale a new culture around quality care.

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