Though Tuesday marked the last day of the 2014 event, the momentum at Health Datapalooza certainly didn’t wane from days prior, with attendees and speakers alike bringing their health data A-games to the sessions and exhibit hall floor for one last data liberation hurrah.
Susannah Fox, associate director at the Pew Research Center’s Internet & American Life Project, moderated the day, saying that while there is “great potential” in the health data sphere, “we’re not there yet.”
“I place health data in the adolescent stage, and just like how you deal with a teenager, we need to give the data tough love,” Fox poignantly stated.
Speaking of love, the quantified self (QS) movement, and the mobile health tools, wearables and trackers associated with it, has gotten an increasing amount of it recently. Adriana Lukas, founder and organizer of London Quantified Self, shared her perspective with the audience.
With the patient acting as the point of integration, Lukas stressed the need for collaboration between caregivers and their patients for QS to have a lasting impact. In addition, Lukas noted that we’ll soon begin seeing corporate wellness programs that utilize QS data to negotiate better health insurance rates. “With algorithmic medicine as the basis, we’re moving toward a wellness industry.”
Lukas also reiterated that, for QS data to be useful, it needs to be tracked consistently and continuously. That said, Lukas stressed that “we can’t treat individuals as data cows to be milked for the data bucket.” Instead, the focus needs to be on “how do we enable those in the QS movement to do what they do already, but better?”
Vinod Khosla, founder of Khosla Ventures, discussed the business of innovation in relation to health data, asking attendees to consider if humans should to be kept “out of the loop” in terms of data analysis, give way to machine learning, or assume a different role altogether.
“I do believe we need to change the practice of medicine,” said Khosla. “We do, and we need to make it the science of medicine. I’m not faulting what we have today — it’s the best around — but we’re now at the point where we can do it better.”
“Data-driven findings will uncover patterns in clinical data and algorithmically create new clinical guidelines using practice-based evidence,” Khosla said.
Director of the National Institutes of Health (NIH), leader of the Human Genome Project (HGP), and champion behind the HapMap catalog, Dr. Francis Collins spoke about genomics as the driver of the open data movement, saying that it lay the foundation for open access.
Collins also highlighted how pharma and genomics are working together to improve quality and accuracy of care. With genome mapping growing increasingly more affordable for consumers, “the goal here is that we will be able to take the sequence, integrate it into an electronic medical record (EMR), and use this information to better prescribe medications and provide evidence-based care,” said Collins.
He ended his session by taking a page from Antoine de Saint-Exupéry’s book, telling the audience that, “as for the future, your task is not to foresee it, but to enable it.” (And enable it, we will.)
In what will be her final Datapalooza appearance as secretary of Health and Human Services, Kathleen Sebelius came out next — and to an appreciative, welcoming crowd and a standing ovation, no less.
“We’ve been making health policy for years by anecdote, not information,” said Sebelius, also noting that, “for the first time ever in this country, we’ve empowered consumers to own and have control of their data and care. If we, in government, who have amazing amounts of data, are willing to remove the barriers to innovation, then you will innovate. You’ll develop apps, and you’ll help us solve some of the biggest public health challenges,” she said.
Lazy data, Sebelius said, must be pushed into the public domain and used for public good. While privacy concerns have and will always be a top priority, “you can share all of this data and do that at the same time,” Sebelius stated, citing the launch of openFDA and the recently released Centers for Medicare & Medicaid Services (CMS) datasets as giant steps in the right direction.
Referencing expressionist painter Vincent van Gogh, Sebelius then told the audience to “consider this conference to be your canvass, and the information that we give you are your paint,” asking for the health data community’s imagination and commitment to innovation. “The paint is mixed and ready to go, and the canvas is open and ready for use. I can’t wait to see what the creations look like!”, she said.
As part of the running demonstrations at the conference, Amy Gleason, chief operating officer of CareSync, presented her app, which enables patients to better store, manage, digest and share their personal health information. The 2nd annual “Code-a-Palooza” challenge winners were also announced, with the ONC’s national coordinator of Health Information Technology, Karen DeSalvo, M.D., presenting. Fifty-six developers submitted proposals to the challenge, with the goal being to create new visualization tools that help consumers use the 2012 Medicare Provider Payment data, released by CMS in April 2014.
The winning application, LyfeChannel’s Smart Health Hero, based out of San Carlos, CA, had a “laser-like focus on patients’ needs, giving them data in a format that is easy to understand,” according to judges.
Rounding out the last general session of the event, Health Data Consortium CEO, Dwayne Spradlin, provided a snapshot of the organization’s current roadmap, distinguishing “get the data, use the data and improve health” as the three foundational strategies on which HDC will focus. “We can change the system, solve the problems, improve health and save lives,” said Spradlin, adding that, as both patients and health data leaders, “we need your support and your innovation, but we also need your voice.”
Joining Spradlin on stage was co-founder and CEO of Journalism Online, LLC, Steven Brill, where the two spoke about revenue cycle challenges, pricing transparency, care quality and accountability. Brill mentioned that “as transparency gets better, there are two other aspects in the mix that must be considered: price and quality. You can get transparency on price, but cracking transparency on quality is another thing. For one, it’s hard to judge. But once you do have something, people might not believe it.” He also underscored the need to give data when there is data to give, saying that “people can handle information if they’re given it, and should be given it even if they can’t handle it.”
Spradlin also presented the Health Data Liberators Award, an honor that recognizes those whose initiatives and hard work are improving the state of the healthcare industry. ProPublica’s Prescriber Checkup team were this year’s award recipients, who utilized CMS released Medicare datasets to show risky prescribing practices and billions of dollars in fraud and waste.
Want more health data goodness? Check out our Health Datapalooza recap from Monday, June 2!