Sitting down to summarize my experience at Health Datapalooza in Washington, D.C., the past few days is a challenge because the open data conference is such a whirlwind of ideas and chance meetings that it is tough to pinpoint one area to focus on.
In its fifth year, the conference put on by the Health Data Consortium has grown to more than 2,000 participants, most of whom are working on how greater transparency and freer data flow could solve some of healthcare’s most vexing problems. I got a chance to talk to startup CEOs, public health informatics specialists working in patient-centered medical homes, pharmaceutical execs working on clinical innovation, and graduate students in economics working with Medicare and hospital system data. As one former health system CIO told me, when he goes to HIMSS it is to spend the whole time on the show floor comparison-shopping among all the solutions in one place at one time, and he doesn’t even have time for panel sessions. But when he comes to Health Datapalooza, he has no idea what to expect or who he is going to talk to. Yet he always finds it worthwhile, he said.
Rather than writing up full sessions on topics such as public health’s big-data needs, I thought I would just pull out some of my favorite quotes from the event as food for thought. It is going to take me a while to digest everything I heard at the meeting, and in the near future I may contact some of the speakers for interviews about their work. But I hope the following will give you a flavor of what the Datapalooza is all about.
• NIH Director Francis Collins M.D., Ph.D., gave an inspiring keynote: He noted that the cost of full genome sequence may drop to $1,000 by the end of the year, and that the Global Alliance for Genomics & Health is working on a framework for sharing genomic and clinical data. He called PCORnet, the national patient-centered clinical research network, “an unprecedented network of networks” to conduct observational trials almost for free. He also said NIH is working on a “data commons” concept: “We ought to have a virtual place where people can find data not balkanized, but readily usable,” he said.
• Outgoing HHS Secretary Kathleen Sebelius got a standing ovation from the Datapalooza crowd. She noted that HHS has not always been good about sharing data: “The information oligarchy is a thing of the past at HHS,” she said. “The information oligarchy has become an open information democracy."
• Vinod Khosla, a Sun Microsystems co-founder and entrepreneur, predicted that “in the next 10 to 20 years data science will do more for medicine than all biological sciences combined.”
• One of my favorite speakers was Rachel Kalmar, chief data scientist for Misfit Wearables. Wearing 31 health trackers, she said none lets you have high-resolution access to your own personal data, and they don’t talk to each other. “We need to create a municipal utility system to connect the plumbing of wearable health devices,” she said. She asked what it means to own this data. Who should have access to which data? We should have access to our data because it is becoming from our bodies, but the issues are complicated, she added.
• Another dynamic speaker was Bechara Chouchair, M.D., Commissioner of the Chicago Department of Public Health: “Our focus is on how we can get real-time data and not ancient data. And how do we connect data into strategy. This is all about strategy to improve population health,” he said. “That is why we are using health IT — to see if we can move the needle on our top 12 health priorities in the City of Chicago, and not because it is a cool or fun thing to do to build apps or because some foundation is willing to give us money.”
• Evolent Health’s Shantanu Nundy, M.D., discussed some of his research into clinician perceptions of receiving diabetic patients’ data. “What we found is that the way you design interventions and make data actionable is critical,” he said. “Just giving clinicians patient-generated data is not going to solve the problem. You have to think through how they will use it in a real-world setting.” (Evolent, by the way, was one of our Up-and-Comer profiles accompanying the HCI 100 this year.) Nundy added that working on integrating patient-generated data makes the most sense in a value-based-care world. But adding the data in a fee-for-service world doesn't make sense, he added. “You run the risk of overwhelming physicians if it just gets added on to a broken delivery model. It could be counterproductive.”
Unfortunately, I arrived too late to catch the talk by always inspirational Atul Gawande, of the Checklist Manifesto fame!
My main takeaway from the meeting, I guess, is that there is an increased focus on figuring out how patient-generated data is going to be melded with the data gathered in other clinical settings and curated in a way that makes sense for providers. That conversation requires more input from CIOs and CMIOs, and my only regret was that I didn’t see more of them at the conference. But as the former CIO I did speak to said, rather than being in visionary mode, CIOs are currently “heads down” trying to get over the meaningful use hurdles. They don’t have the bandwidth for much else right now.
