Health Data Liberators Are Changing Medicine. Here's How.

Janae Sharp
APRIL 25, 2019
data liberator,health data,healthcare interoperability

I am aware that many object to the severity of my language, but is there not cause for severity? I will be as harsh as truth, and as uncompromising as justice. On this subject, I do not wish to think, or speak, or write, with moderation. No! No! Tell a man whose house is on fire to give a moderate alarm; tell him to moderately rescue his wife from the hands of the ravisher; tell the mother to gradually extricate her babe from the fire into which it has fallen — but urge me not to use moderation in a cause like the present. I am in earnest; I will not equivocate; I will not excuse; I will not retreat a single inch; AND I WILL BE HEARD.

–William Lloyd Garrison, writing in the first issue of The Liberator

The Liberator is both an abolitionist newspaper and a type of erotic paraphernalia. It also happens to be the name of an award at Datapalooza —the Health Data Liberator — given each year to a person who has made great strides in rendering healthcare data more accessible and user-friendly. So, if you’ve attended Datapalooza, you have likely come to the same conclusion that I did: the award surprisingly isn’t named in honor of the pillow, but rather, for The Liberator, that antebellum appeal to the nation’s morality. In the words of that publication, and the spirit of that award, here is “self-evident truth.”

I’ve attended Health Datapalooza twice. I love the academic sessions, and the conversations in the hallway afford valuable insights about policy impacting health IT. (Datapalooza is also a #BabiesIncluded conference, and I attended sessions with my 4-month-old.) I asked a few people at the conference last month what they thought was meaningful, and every person mentioned that this conference had more policy-related workshops and panels than other conferences. The sessions tend to have great content, and the spirit of government collaboration makes it one of the best conferences for insights into the biggest payer in the United States, the Centers for Medicare and Medicaid Services. Interestingly, there are more female speakers than men, which is unusual in tech. Overall, Datapalooza is one of the most inclusive conferences and one of my favorites.

Each year, participants can nominate someone who has done great work in data sharing. Former winners and a panel select the champions. However, the Health Data Liberator award — which I still cannot say without thinking of William Lloyd Garrison and abolition, let alone that pillow — cannot possibly include all of the people doing great work to make healthcare data more transparent and useful. In honor of the 10th anniversary of Datapalooza, one of my favorite conferences, let’s go over some women who could and should win the award.

Julie Mann, Chief Commercial Officer, Holon Solutions
Holon Solutions provides a technology that allows physicians to surface any population health insights relevant to a patient at the point of care. All of that population health data and those analytics insights you are paying for? Now you can actually let physicians use them, rather than letting them uselessly sit in a separate login. The physician portal that literally no one wants to use because it requires a series of separate steps, even though it would alert doctors when their patients need more care? Holon allows doctors to see that automatically in a patient’s record. The interesting thing about their technology is how difficult it is for people to define: Is it an artificial intelligence tool scrubbing records? Is it hardware? Holon Solutions is liberating data for Banner|Aetna and several other companies, and the more meaningful data physicians have access to without extra clicks, the better.

Mona Siddiqui, M.D., MPH, Chief Technology Officer, U.S. Department of Health and Human Services
Mona Siddiqui has accomplished much for healthcare funding transparency and received funding to create a lasting legacy of healthcare technology improvement. At Datapolooza 2019, Siddiqui spoke about transparency, stating that we should not have billions of dollars of data programs funded by HHS without transparency into the effectiveness of those investments.
 
Siddiqui has done significant work in improving data transparency and federal funding for data improvement. She mentioned that “we should be able to track if a billion-dollar project has had its intended effect,” and her work is advancing this possibility. Government transparency is a truly revolutionary step in the right direction, as there is “no organization on that planet that’s a steward of as varied health information as HHS.”
 
Karen DeSalvo, M.D., MPH, M.S., Professor, UT Austin Dell Medical School
DeSalvo developed the application programming interface (API) approach to sharing data that tech giants like Apple picked up for their model with a patient-based approach to sharing data. She led efforts at the federal level to share data and make data more transparent.

While serving as acting assistant secretary for health and national coordinator of health IT, she cemented a patient-centered approach to data sharing. Patients should be able to access and share their data in a usable format, and DeSalvo brought healthcare a step closer toward that goal.

Andrea Downing, Founder, Brave Bosom
Andrea Downing is doing important work in protecting patient data privacy, and she took on some of the worst data vulnerabilities with Facebook. When the data of thousands of patient groups on Facebook was subject to serious data security problems that violated Federal Trade Commission breach notification law, Downing partnered with Fred Trotter, chief technology officer for CareNet Systems, to download the names of patients whose data (including information about their place of employment, addresses, emails and more) were compromised and then notify these patients and demand answers from Facebook. More patients should know about Downing and Trotter’s FTC complaint because Facebook actively solicits patient groups — but the data of those groups are not secure, even if the group is closed or secret. If you are looking for a safe community to discuss health data decision making, Facebook is not the platform for that, and Downing has been critical in shedding light on this problem.

Lisa Simpson, M.D., MPH, President and CEO, Academy Health
Lisa Simpson has a saying: “Your data make you credible, but your stories make you memorable.” In her role as CEO of Academy Health, she has always highlighted the people who are on the ground, doing the work of data liberation. “Every role is important in our quest to have better patient data to inform care,” she says. “We can start with the ‘big P’ and ‘little P’ of policy and promotion. If government policy makes data available, but no one uses it or knows about it, the data was not really liberated. Using our health data is part of the journey. Finding the best ways to use it with more people that are excited about data backed decisions and improving health data.”

Simpson views Academy Health and, by extension, Datapalooza as platforms that amplify the message of data liberators. Academy Health is one of the host organizations for Datapalooza. A decade ago, it started as a collaboration between HHS and the Health Data Consortium. Simpson and her constituents recognized the importance of convening people to hear which data were available and how it could be used to improve patient care.

The sessions at Datapalooza still provide important education about improvements in data for healthcare systems. According to Simpson, “Often we see that people who are brilliant with data don’t get the same recognition in the field.” Through platforms like Datapalooza, policy and politics come together. Even if the people working on these policy problems aren’t the ones building the data connections, they can lay the groundwork for those connections to be built.”

Who would you nominate as a Health Data Liberator?

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