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Making health data accessible with a goal of improving healthcare quality and cost

Dan Emerson

As politicians have continued to debate the pros and cons of the Affordable Care Act, aka "Obamacare," some federal health officials have been working to spread the word about another aspect of healthcare reform: the move to give consumers more access to their own healthcare data.

Bryan Sivak, chief technology officer for the U.S. Department of Health and Human Services, and Claudia Williams, senior advisor for health IT at the White House Office of Science and Technology Policy, two speakers at the recent StrataRx conference on healthcare data, discussed the federal government's effort, which is taking place on several fronts.

The initiative is based on the concept that consumers can take a more active role in their own care when they have access to their own medical records. The ultimate objective is to enable providers, consumers and payers to access, exchange and use data as a tool to improve the quality of healthcare and to lower costs.

Sivak said that because of its enormous potential as a tool to help make healthcare more effective and cost-efficient, "this is 'big data's' big moment."

One part of the federal effort is the Blue Button Initiative, launched by several federal agencies in 2010. By downloading the Blue Button app, consumers can view, download or transmit their data securely. According to HHS, more than 1 million patients have used Blue Button to assemble and download their personal health information into single, portable files.

The rapidly expanding use of predictive analytics has the potential to remove billions of dollars in costs and also improve the quality of care, Sivak said. The goal is to "disseminate data as far and as widely as we can, and educate internal and external stakeholders about big data and how to use it," Sivak said.

Beginning this fall, Medicare and Medicaid patients will be able to view, download and transmit their own healthcare data contained in providers' electronic medical records systems. "This is a nascent ecosystem that is just beginning to emerge to help patients collect data, understand and help solve some problems; it will even enable them to reconcile errors in their own healthcare record," Sivak said.

The Office of the National Coordinator for Health Information Technology is preparing its own outreach campaign to encourage patients to download their own medical records through HHS' Blue Button Plus initiative. "We're trying to build a community around this effort," Sivak said.

"We have changed from a closed system to an open one when it comes to data. For example, charge data for the most common inpatient and outpatient procedures has been downloaded more than 200,000 times," he said.

Health data entrepreneurs will play an essential role in helping patients, providers and insurers make the best use of data to accomplish the goal of a more effective and efficient healthcare system, Sivak said. "People who have the potential to disrupt industries tend to be people who are outside those industries. Technology in itself is rarely, if ever, the solution to problems, although it can be an accelerant and catalyst. We're working to encourage and enable disrupters."

Williams said HHS is actively seeking the involvement of private sector entrepreneurs in the drive to "free data. These changes are inevitable but it's up to us to speed them along, and the time is now. If you're a vendor or a developer creating products, either to make it easier to use or 'unlock' the data and let it be 'innovated on,' that's what we're asking you to do."

HHS is seeking applications for a program started last year, called HHSentrepreneurs, which connects private sector innovators and entrepreneurs with teams of federal employees working on projects that address some of the challenges in health, healthcare and human services.

[Photo by - JasonGoTo]

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