Driving innovation in health through the use of open data: Health Datapalooza, Year 4

Health_Datapalooza_Web_Badge_300x250_042612_v1In the $3 trillion economy that is American health care, the role of information technology is central to transforming this huge piece of U.S. fiscal activity. This week convened the fourth annual Health Datapalooza (HDP) in Washington DC, with the underlying theme, “health engagement is the blockbuster drug of the 21st century” (quoting Leonard Kish).

This meeting of over 2,000 registrants – huge growth from the first year’s 400 attendees — is organized by the Health Data Consortium (HDC) , whose CEO Dwayne Spradlin kicked off remarks on Day 2 of HDP4. He described the HDC, a public-private collaboration led by Robert Wood Johnson Foundation, the Department of Health and Human Services, the Institute of Medicine, and a growing list of commercial companies driving health innovation including but not limited to Sanofi, athenahealth, and others working together with a common vision. The meeting brings together health data competitions and challenges, and a diversity of participants: patient groups, biotech, VCs, data scientists, pharma, government reps, and health care providers.

The British Secretary of State for Health, Jeremy Hunt, was an early speaker on Day 1. He commended the U.S. for moving toward providing universal health insurance to all U.S. health citizens. Continuing his patient-centric message, Secretary Hunt described the program in the National Health Service to move patients to the center of health care, invoking the words of Dr. Joslin, father of innovation in diabetes care in the U.S., who said of the person with diabetes, “he who knows the most, lives the longest.”

Secretary of Health and Human Services Kathleen Sebelius spoke to the importance of developing health data tools and transparency for fully implementing health reform on a broad scale. She described the opportunity as a long overdue unleashing of innovation in American health care.

A key theme throughout the two days was the importance of unlocked health data trapped in institutions still using inadequate technology, Spradlin said. Current practices and payment may limit the sharing of information. Neither culture nor technology change is easy, he recognized: “We have our work cut out for us.” But health transformation is a national priority, Spradlin noted. Economic strains are a forcing function, he described, which compel the health care industry — and all stakeholders — to participate in this transformation.

Deven McGGraw of the Health Privacy Project for the Center for Democracy & Technology presented the first health data Liberators Award. The HDC evaluated many candidates for the award: the winner was Dr. Nirav Shah, NY State Health Commissioner, who is making health data publicly available for apps, tools and services for New Yorkers. With a budget of $50 bn a year, Dr. Shah is using existiing data to develop targeted health care projects for public health. In March 2013 he led the launch of the nation’s first open data site: Health.Data.NY.Gov.

Always a highlight high-energy speaker at HDP, Todd Park has the coolest title in town: the CTO of the USA, says Thomas Goetz. Park is the standard bearer of Data Liberacion! and has played a key role inspiring health stakeholders to improve care through the innovative use of data to improve outcomes, save lives, and lower costs. “There has never been a better time to be an innovator at the intersection of health, data and IT,” Park said, calling out four key reasons:

1. Through payment policy changes under ACA and commercial payers, the emergence of a smarter health system focused on quality, not quantity of care – avoiding mistakes, driving patient health engagement, Accountable Care Organizations (now over 250 serving 4 mm Medicare enrollees), and medical homes. What these models all have in common: they’re rewarded for delivering coordinated care that optimize the health of patients. Park says these models “Reward the stitch in time” that saves patients and improves quality of care.

2. Historic increases in adoption and use of electronic health records – empowered by the HITECH Act and the hard work of doctors and hospitals. Over half of doctors and over 80% of hospitals are now using EHRs. “At long last the manila folders are turning into electrons,” Park said, with “huge positive implications.

3. DHHS making available a growing supply of key government information from charges and quality to regional health statistics and the latest science, available in computer readable downloadable form — especially important for entrepreneurs to corral and apply to innovation. This is, as Park deems it, the “CMS Office of Data Liberacion!” aka the CMS Office of Information Products and Data Analysis

4. The launch of Health Insurance Exchanges, where Park says small businesses will have similar opportunities as big companies to accessed whole new health insurance plan models that use data to improve customers’ experiences. Park challenged developers to “use ingenuity to rethink health insurance plan design and to sign up young people,” who will be crucial to have enrolled in plans to ensure a balanced risk pool.

Next year’s Health Datapalooza will be June 1-3, 2013, in Washington DC. If you’re involved in some way at the intersection of health, patients, and information, it is a must-attend meet-up.

blue_button_finalHealth Populi’s Hot Points: This fourth year of HDP exhibits tremendous growth in numbers of attendance, and in the breadth of participant stakeholder groups. One example: Pfizer’s Craig Lipset, from the Big Pharma sector, talked about moving patients from their role as “subjects” in clinical trials in R&D to patients as participants. Lipset noted that only 4% of physicians participate in clinical trials, and 7% of patients said their physicians have talked with them about participating in a trial. Pfizer is joining the Blue Button+ initiative to allow patients to access clinical data. In a recent study by Weitzman, 91% of patients said they’d welcome the opportunity to share their health data. Pfizer’s launch of this project is a big milestone in pharma’s involvement in health data access and transparency.

The expansion of participants in number and type in the HDC and focus on the patient-person at the center of health data innovation is exciting and inspiring. Those of us working at the intersection of health-consumers-information-tech are not Pollyanna’s about the heavy lifting and hard work involved in continuing to move from paper-based data and siloed information toward data liquidity and patient access to their own health information.

Dr. Shah spoke of “the freedom to own our own data.” This is increasingly become the reality for American health citizens owing to adoption of data standards,  cloud computing, democratization of devices (e.g., growth of smartphones and tablets among both providers and consumers), aligning payment for quality, and consumers’ growing self-tracking and consumerization in health care.

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