Medicare data is being used to produce better healthcare for older adults, and at the Louisville Innovation Summit on Tuesday, a panel of health and tech experts discussed how open healthcare data is being used and how it can improve.

A session called “When Seniors, Medicare Data and Pharma Collide: The Right Drugs, to the Right Patients, at the Right Time,” focused on the current state of Medicare data. The panel included:

  • Laura Shapland, CEO of CareSet Systems, and self-dubbed “data groupie”
  • Bryan Sivak, who was the CTO at the US Department of Health and Human Services (HHS) from July 2012 to April 2015
  • Dana Abramovitz, CMO at Seremedi, Inc.
  • Sonja Quale, vice president and chief clinical officer at PharMerica

“Data belongs to the patients,” Shapland said, “and we need to be better shepherds of the data.”

The data she spoke of–Medicare claims data–was previously unavailable. Now, some of the data has been released, in order to help advance conversations around data. One major issue, Shapland said, is that “we’re swimming in data…and because it’s so separate and siloed, people are doing the same analysis multiple times.” The first step, she said, is to make it more available.

Shapland said that she has looked at claims to understand outcomes. “When a patient is diagnosed,” she said, “what happens before and after, from a claims perspective?”

US vice president Joe Biden had started an initiative to open data from cancer patients. Specifically, for Medicare patients who had been diagnosed over the last six years. “We have all the records before and after the diagnosis,” she said, “which is the start of the conversation.

While most of the work begins with exploring broader trends in data, that can lead researchers to ask very specific questions, she said.

“We want to understand a particular cancer patient,” Shepland said. “What is their journey? How does it differ with people who have undergone different treatments or visited different hospitals?” Then, she said, you can dig into the details.

A lot of data has been open through Centers for Medicare and Medicaid Services, (CMS), which Shepland said has “spawned tremendous research and commercial progress. Companies in every sector are using open CMS data,” she said.

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Quale picked up on this. As someone working with pharmacy data, she explained how the information, available in real-time, can be leveraged to make better clinical decisions–more quickly–than can happen by just using medical claims.

“We’re trying to take the data and improve clinical decisions,” she said. “We can combine pharmacy information with diagnosis data. We can also use an adverse drug event trigger tool to evaluate risks that lead to poor health outcomes.”

Quale said that she remembers seeing a “trigger tool” and being excited, then dismayed, when she realized it was a PDF. “We can do better,” she said. She developed a risk-stratifying system, creating a risk score by combining pharmacy and diagnostic information to determine high-risks, then delivering that info to physicians. Quale also worked on a system to combine the “Beers list” of data–which includes medications that should not be used by seniors–with pharmacy information.

Sivak spoke about his experience at HHS–and how, “over the last decade, there’s been a huge push to get data out there.” Under President Obama, he said, there have been a lot of positive outcomes in terms of changing the culture around data. “The bureaucracy has accepted the idea of open data,” he said.

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He worries about what will happen when a new administration comes into office, especially since it’s easy to make excuses for not opening up data. Sivak pointed out four ways that the new administration should focus on data in the future:

  1. Invest in resources. Today, government resources that examine, cleanse, and make data open are incredibly limited, he said. In HHS, there are “five people who do that.” That’s out of a 90,000 person organization. “We have to invest, as a country, in resources that focus on that job,” said Sivak.
  2. Focus on important data sets. Early on, Sivak said, there was a big push to put as many data sets as possible out there–to hit targets. But some of those may not be as relevant to the public than others. He spoke about an initiative to release “demand-driven open data–a way for outside people to say they’d like to use data and connect them to the owner of the data.”
  3. Is the data being used effectively? Sivak is looking specifically at CMS with this point. “There’s a big problem,” he said. “The data is super expensive.” Sivak had once tried to make a line-item in the budget for CMS to provide data for free for certain users. He believes it’s worth taking up with our political leaders–and says it would only cost $15 million a year to provide completely free access to health data.
  4. Do people “love” working with the data? How is the user experience with the data? Is it working well? Is it easy to use? These are important questions, Sivak said.

Shelpland took issue with Sivak’s third point, saying that CMS is really not all that expensive. But Sivak argued that “government should remove as many barriers as we possibly can,” he said. “The CMS chief data office is really pushing the envelope,” he said, “but there are still places we can keep pushing.”

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