8 key takeaways from health data-palooza

Last week’s Health Innovation Week in DC was a watershed moment for data in healthcare and public health. I was fortunate enough to attend two key events.  HealthCamp DC, an unconference organized by the HealthCa.mp Foundation team around Mark Scrimshire and Kaiser Permanente’s Danielle Cass, brought together innovative thinking around the use of health data and delivery of health at the Kaiser Permanente Center for Total Health; it was also a great opportunity to meet some stars of the health care social media Twitterverse. The Health Data Initiative Forum  at the NIH (affectionately titled Health Data-palooza) by the team around HHS CTO Todd Park, Aman Bhandari and Cristian Liu provided enough energy and motivation for several conferences and created an elated can-do attitude among the 500+ attendees. Especially CTO of the United States Aneesh Chopra and Todd Park showed with enthusiasm that the US government is taking data, data openness and its opportunities seriously to make a difference.

Here are my 8 key takeaways from DC’s Health Innovation Week. I’ll post more detailed information on the “topics to watch” over the next few weeks.

• Patients get better health data access. Patients are taking control of the management of their health and their health data, illustrated by the rapid growth of the Quantified Self movement, PatientsLikeMe or 23andme; consequently, they will be the driver of change in the health care system. “Blue Button it” (in analogy to the VA’s blue button that allows patients to download their health record data) was a key term at the conference showing that data openness is on the upswing.
• Data users get better health data access. The US government is serious about open data (Todd Park calls it ‘data liberacion’), from launching Data.gov and HealthData.gov to app challenges across agencies to organizing the HDI Forum. More data collected by government, providers, payers and the crowd are made available for research (by no means enough, but it’s a start). This could be enhanced by the “Green button”, a new movement to enable and encourage patients to provide their data for research and health care improvement (of course, true data control by patients will then imply a “red button” as well).
• Privacy issues require legislation to punish abuse (not restrict access). With more health data being available, the chances that individuals can be identified will increase. Restricting access to data prevents innovation, so in order to prevent data lock-down because of privacy concerns, creating legal deterrents against the abuse of data has to be a top priority.
• Apps - a mash-up of knowledge can create real innovation. Truly innovative applications and services based on health data require a unique combination of knowledge about data/statistics, health, and technology, as well as creativity. The HDI Forum showed a number of fantastic applications of health data, some of which are featured here; I will create a HEALTH APPS series of blog posts to highlight examples.
• There is a new health data ecosystem. I didn’t attend the first HDI Forum, but heard from others that last year was more about the vision, while this year showed real substance. The number and quality of apps shown at the Forum were phenomenal. App challenges and entrepreneurial spirit paved the way, but organizations like Health 2.0 are now making it easier for developers and data providers to find each other and develop innovative solutions.
• Data work is getting speedy. Developers are testing concepts in a matter of hours, and APIs make data available in real time. Compare this to the months or years it takes to get new methods and data through the scientific peer review process. There is a huge opportunity to complement the scientific data synthesis process with speedy data mashups. And data owners can expect faster returns (insight, use) on putting their data out there.
• Established health care players are already creating change. The VA’s created the Blue Button for covered individuals. Kaiser Permanente launched the Center for Total Health and makes thorough use of health records and preventive medicine to improve health (and reduce cost). Aetna is launching a challenge to develop apps for modeling contributing factors to obesity. Just three examples.
• However, health data revolution comes from outside the existing health care system. Tim O’Reilly called it “outside forces waking a sleeping giant”, and the innovation shown by new entrants in the field proved him right. SleepBot by a group of students from Cooper Union, Northwestern and NYU; PatientsLikeMe mashing up trials.gov data with their own database; and free, ad-supported EHR system Practice Fusion with 13M patients were just three impressive examples.

It was an elating, action-packed series of events in DC. Now it’s time to take the motivation and inspiration from the event and translate it into more data openness, innovative approaches and collaboration among data owners, health and data experts, developers and entrepreneurs.