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Disconnected Health Data 'Beyond Absurd,' Says Innovator and Patient

 |  By smace@healthleadersmedia.com  
   August 06, 2013

Health data from medical devices and electronic health records remains frustratingly siloed beyond the reach of individuals and analytical tools. Anna McCollister-Slipp, co-founder of a real-time analytics platform, is working to change that.



Anna McCollister-Slipp

Patients want it. Innovators want it. Providers want it. What is it? Data, liberated from electronic health records, and medical devices. Not to mention millions of records and documents still trapped in paper form.

Getting this data into a form where it can be browsed, analyzed, and applied to a thousand new theories about disease and treatment is no small feat. Doing it while the healthcare system as we know it is being reinvented is even more challenging.

In the past, I've written about the e-patient movement, healthcare hackers, and how innovation happens. I've talked with some of the leading innovators and the pioneers working on health information exchanges.

When talented individuals bring their passion to more than one of these callings, they can really make an impact. One such individual is Anna McCollister-Slipp. First, she's an innovator. McCollister-Slipp is co-founder of Galileo Analytics, whose Galileo Cosmos visual data exploration and real-time analytics platform was used in a March 2013 demonstration by the American Society of Clinical Oncology (ASCO) to visually explore complex data in ASCO's CancerLinQ prototype.

But McCollister-Slipp has a special stake in this work. She's also a type 1 diabetes patient, with complications.

"I did everything and more than what you're supposed to do, but it still doesn't work very well, so I'm an outlier in many respects," McCollister-Slipp tells me. "There's a lot that you could learn from these big sets of EHR or registry data that people aren't able to access, because somebody has ownership over it. They're afraid that somebody else might publish something from the data set that they've collected, that they might want to. It might occur to them to study and publish on one day, so they don't release it to others to be able to access and to analyze.

As a result, McCollister-Slipp says, "we've got this rich repository of data all over the place that only a few select folks have access to, and it frustrates me incredibly. There's so much that we need to learn in terms of generating better evidence for diabetes, especially type 1 diabetes, and the real experts can't access the data, because it's being held up in these data silos."

Every data point in those data silos started with a patient, and while it remains important to protect patient identity, it is just as important to make that data appropriately available to those who would analyze and theorize and play with the data in unimagined ways in order to identify new patterns or correlations that today's healthcare system, with its antiquated system of clinical trials, cannot unlock fast enough.

McCollister-Slipp is not content to merely advocate for these changes, or even merely to develop innovative new analytics tools. She also epitomizes the movement of "quantified self" patients who measure every possible health data point they can to help manage their diseases.

McCollister-Slipp has four medical devices on her around the clock. Two are literally attached to her body. One is a continuous glucose monitor, and another is an insulin pump. A third is a SymlinPen, a biologic-in-a-pen she uses to control glucose at mealtime. The last one is a second glucose monitor, which provides auxiliary readings.

Still, McCollister-Slipp cannot see relevant patterns in the data from the combined data outputs of all these devices – because they are not available for analysis outside of each one's closed data system.

"You still have to hand-write most of the stuff," she says. "It's beyond absurd."

McCollister-Slipp also has chronic kidney disease, and must monitor her blood pressure with a wireless blood pressure monitor. She also has a body analysis scale which tells her about her bone mass as a portion of her body, as well as her level of hydration. Finally, she has a fitness tracker device, to keep tabs on her activity level as she hits the gym or heads out for a walk.

"All of that is very relevant information for what I need to do in terms of my day-to-day, hour-by-hour treatment of type 1 diabetes," McCollister-Slipp says. "But none of the data can be collected and integrated into one place. So you've got all of this critical data just at the patient level. It would be very helpful as I determine what insulin I need to take, how I need to adjust my medication to stay healthy. But I can't do it unless I sit down with or manually enter it into a spreadsheet and do Excel stuff."

So, McCollister-Slipp is not terribly impressed by mere talk of empowering people's chronic disease care for themselves. "The technology and the people who have control of the technology from the device manufacturers to the current way that we regulate things at FDA, it's just not making it possible for that to happen," she says.

"It's a nice thing to say from a podium when you're a physician or a public health person who's talking about the need to manage chronic disease, but nobody is really pushing for this to change. And that's one of the things that's motivated me to get involved in this stuff."

Recently, McCollister-Slipp found a receptive audience at the national level. This spring, ONC's Health IT Policy Committee formed a Food and Drug Administration Safety Innovation Act (FDASIA) Workgroup specifically to look into ways to get mobile medical applications to work together with the rest of the healthcare system. And they had the good sense to appoint McCollister-Slipp to that workgroup.

It's lack of political will that's keeping the necessary data sharing from happening, she says—company politics and marketplace politics.

The timing is crucial, since there is still an opportunity to establish requirements in Meaningful Use Stage 3 to demand an end to these data silos when those regulations are written in 2014.

"I'm trying to get other people within the diabetes community and other disease communities and groups to join with me," she says. "If we're ever going to have a learning health system, if we're ever going to be able to do real outcomes research for diseases like type 1 diabetes, we need this data to be collected into the EHR. Outcomes for type 1 diabetes are horrible."

The entire notion of a learning health system is worth a column of its own. Meanwhile, I wish McCollister-Slipp all the best on her self-described crusade. Meanwhile, be sure to check out ASCO's CancerLinq, which has implications across all of disease management.

Scott Mace is the former senior technology editor for HealthLeaders Media. He is now the senior editor, custom content at H3.Group.

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