This year’s Health Datapalooza meeting brought together officials from the highest levels of government both here and abroad with health system and private sector innovators – all while maintaining a focus on the patient perspective.

In his first health IT-focused speech since assuming his post as U.S. Secretary of Health and Human Services, Tom Price, M.D., addressed Datapalooza attendees emphasizing the need to simplify reporting and usability burdens in electronic health records (EHRs).

“The promise of health IT is so great, but we must recognize that a one-size-fits-all, inflexible system for our nation’s patients and physicians simply will not work,” he said. “We’ll work on reducing burdens from the federal level but folks on the ground need to help make certain that IT increases usability and interoperability for physicians and patient, and I’m optimistic of the innovations you can come up with to make that happen.”

Other federal government officials at the conference included U.S. Representative Michael Burgess (R-TX) who echoed some of the challenges mentioned by Price, including lack of advancement towards true interoperability throughout the health care system. U.S. Health and Human Services Office for Civil Rights Director Roger Severino focused on the importance of data privacy and security noting, “With big data come big responsibilities.”

Bringing an international perspective, Saudi Minister of Health Tawfiq Alrabiah highlighted health care innovation in Saudi Arabia outlining how the government uses Uber to deliver vaccines directly to patients’ homes.

Government policy makers certainly represent an important perspective when it comes to using data to improve health and health care, but Datapalooza is unique in its ability to offer cross sector discussions around the future of health data and how that data can be used to challenge current practices and trigger change in the industry.

In Friday’s opening keynote, Director of Duke Margolis Center for Health Policy Mark McClellan shared thoughts on health care innovation and value emphasizing the symbiotic relationship between policy reform and new opportunities for delivery system transformation. As a specific example, the former CMS administrator noted, “Health payment reform will create the business cases that drive data sharing and transparency.”

He highlighted findings from The National Academy of Medicine’s Vital Directions report, which identifies priorities central to helping the nation achieve better health at lower cost. Many of these priorities have relevance to both policymakers and those outside the policy world to achieve advancements. In outlining opportunities for higher value health care, McClellan, pointed to cost decreasing efforts such as innovations to better target the use of medical technologies to patients who will benefit from them as well as wireless or remote personal health tools and supports used in telemedicine. 

Former HHS Secretary Mike Leavitt echoed this connection in his remarks, noting that leadership in health care transformation is not only going to come from the government. He emphasized the need for collaboration between public and private sectors, which will require work in developing a common language as well as shared values.

“Opting for straight compassion or straight economics doesn’t work,” he said.

The Datapalooza offered attendees examples of innovations in both the public and private sector. Poonam Alaigh, M.D., acting under secretary for health at the U.S. Department of Veterans Affairs, touted the VA’s leadership in transparency through their Access to Care initiative, a website that allows patients to see wait times and patient satisfaction data at different VA facilities as well as comparisons to private hospitals.  

On the private sector side, David Vivero, CEO of Amino, spoke on a panel about his company’s use of Medicare claims data to create a database patients can use to compare costs and quality across providers. Another panel featured work from IBM Watson Health using cognitive and AI technologies for evidence-based treatment decisions, genomics for harnessing of DNA insights and clinical trial matching.

It wouldn’t make sense to talk about all this innovation without considering those it is meant to benefit. Health Datapalooza 2017 was proud to have yet again met Patients Included criteria and the agenda included both patient-focused topics as well as speakers sharing personal experiences and first-hand knowledge.

Elizabeth Cohen, CNN’s senior medical correspondent, emphasized the need for transparency between patients and clinicians in her keynote address, noting that it is a requirement for trust. Sharing personal experiences as a part of her remarks, she highlighted the need to tailor the amount and type of data shared to avoid analysis paralysis.

In the spirit of patient inclusion, Tom Delbanco, M.D., Jan Walker, R.N., M.B.A., and their colleagues were announced the winners of this year’s Health Data Liberator award. The award recognizes the team’s work on OpenNotes, an initiative that encourages health care providers to share their visit notes with patients.

In a keynote session, panelists reflected on how social media is democratizing health care. The panel, moderated by Mandi Bishop of Aloha Health Inc., collectively emphasized the power of social media to amplify key messages, build patient health literacy and accelerate health care transformation.

“The health care system doesn’t always see all the knowledge and literacy that is building online,” said panelist Casey Quinlan of Cure Forward, noting that social media communities such as those on Twitter are good at self-regulating factual information.

Indeed the power of social media was present throughout the conference with its hashtag generating over 62 million impressions over the course of the meeting. We’ve curated some of the highlights in a Storify here and look forward to continuing the conversation on work aimed at harnessing the power of data to improve health and health care!

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