Health Datapalooza 2015 Continues to Focus on Access to Health Data

On May 31, through June 3, 2015, the sixth annual Health Datapalooza took place in Washington, D.C. Dialogue at the conference focused on the liberation of health data to make it open, accessible, and useful.  Organizers hope that exploring policies, standards, practices and collaborations will enable data sharing across the health system and enable stakeholders to overcome barriers to realize the full potential of health data and how it is an important step towards a patient-centered health system.

The Conference format was to hold morning plenary sessions with government officials and industry experts. The afternoons included breakout sessions on key questions in health data as they relate to business, clinical care, community, consumer, research, and technology. 

On June 1, Thomas Goetz, co-founder of Iodine, helped to kick off the first general session by asking the question, how innovative can we be when it comes to data and how can we use it to create impactful combinations? In a panel on Big Changes from Big Data in HealthCare, moderated by Cici Connolly, managing director of PricewaterhouseCoopers, Connolly noted that major change would not be seen in data liberation until payments shift away from fee-for-service to rewarding value and outcomes. Executive Vice-President and COO of Athenahealth, Ed Park, mentioned the “3 V’s” of health data that include volume, variability, and velocity where high velocity and patient-generated data are key. Former Head of ONC, Farzad Mostashari, discussed the need for consumers to demand access to their health data without excessive cost.

Additionally, a joint Challenge between the United States and the United Kingdom was announced to help communities address obesity using open data.  The US portion of the challenge is seeking solutions that enable public health and health care professionals to help patients and families address the obesity epidemic at a personal and community level. Submissions will be accepted until July 31, 2015.

Also announced on June 1 around the conference was the new FY2013 Medicare Provider Utilization and Payment Data: Physician and Other Supplier from the Centers for Medicare and Medicaid Services (CMS). This public data set includes information on services and procedures provided to Medicare beneficiaries by physicians and other healthcare professionals in an effort from CMS to make the healthcare system more transparent, affordable, and accountable.

The second day kicked off with a panel on Rethinking Healthcare Delivery with 21st Century Data to include experts such as Patrick Conway, Deputy Administrator for Innovation & Quality, CMS Chief Medical Officer, Karen DeSalvo, National Coordinator for Health IT, Tim Kelsey, National Director for Patients & Information, NHS England; Todd Park, Technology Advisor, Executive Office of the President, The White House; and Joe Selby, Executive Director, PCORI. Key themes of the discussion emphasized openness of data and data liberation, innovation aspects, putting data into new uses, the notion of building an infrastructure, and breaking down silos and reaching across sectors.

Karen DeSalvo, announced a collaboration between the US Department of Health and Human Services (HHS) and CVS Health to provide millions of consumers with lifesaving information about preventative services on CVS Health’s MinuteClinic.com and CVS.com/myhealthfinder websites. Healthfinder.gov provides recommendations about personalized preventive services patients should receive based on their age and gender.

Closing out the first session on June 2nd, Farzad Mostashari promoted next steps for Data Independence Day, a movement to start a national conversation about consumer demand for online access and tools to manage health.  Those interested in joining can sign a petition on getmyhealthdata.org or volunteer to request your data and document your experience by tweeting to @GetMyHealthData #tracer. 

CMS Acting Administrator Andy Slavitt addressed Datapalooza during the second general session on Tuesday and announced that CMS data will be refreshed quarterly rather than annually to allow for rapid cycle feedback. He also announced that innovators, in addition to researchers, will be able to access CMS data to develop tools for the marketplace.  Slavitt touched upon major focuses moving forward which include the need to make healthcare the most private and secure data in any industry, addressing health disparities and utilizing CMS data to report trends, providing healthcare providers with more time with patients and information to see all aspects of the patient’s health, and getting out of our own way to move health data. Information blocking was also addressed and Slavitt announced a new CMS/ONC email address for info blocking, noinformationblocking@cms.hhs.gov, where providers can report information blockers in which CMS will investigate.

The final day June 3rd, started with former HHS CTO Bryan Sivak the offering a theory on interoperability by trying to fix it from top down.  He said that big changes happen when you break them down into smaller pieces.  He issued a challenge to the audience that they tackle one specific problem in exchange of clinical data, and he offered the transfer of a children’s vaccination information from doctor to schools, camps, etc. as that data.

The day also included two “fire-side chats,” the first with Dhanurjay “DJ” Patil, PhD, Chief Data Scientist and Deputy Chief Technology Officer for Data Policy, White House Office of Science and Technology Policy moderated by Alyssa Bereznak, National Correspondent of Yahoo News.  Over the course of the discussion they touched on a number of topics that he and his office are working on which included, Precision Medicine Initiative, mapping the Genome, and interoperability and collaboration across government. 

The second chat of the day on How State and Local Governments are Using Big Data to Transform Their Healthcare Systems included: Greg Moody, Director, Ohio Office of Healthcare Transformation; Michael Nutter, Mayor, City of Philadelphia, William A. Hazel Jr. MD, Secretary of Health and Human Resources for the Commonwealth of Virginia, and was moderated by Dr. DeSalvo.  This discussion focused on what each is doing with data they get to make the lives of your constituents better and what data they could use.

The Health Data Liberators Award was presented to Niall Brennan, CMS’s chief data officer and director of its Office of Enterprise Data and Analytics, for his work to share CMS data in innovative ways.  This award recognizes extraordinary contributions to the liberation of data in order to accelerate its availability and foster the development of innovative healthcare products and services.

The conference ended with keynote remarks from Secretary Sylvia Burwell, who offered lofty goal on where the health system in the United Stated can go and encouragement that data-minded people can lead the way.  She said that the convergence of the digitalization of health care, the accessibility of health coverage and a shift in attitudes that make everyone more open to sharing data are combining to set the stage for a historic moment in health care.

Health Datapalooza is convened by the Health Data Consortium, a non-profit advocacy and membership organization based in Washington, DC, that is dedicated to mobilizing health data to transform the US health care system.