Re-imagining How We Provide and Govern Health Care Using Open Data

Screen-shot-2013-06-07-at-6.32.56-AM-300x213Earlier this week, entrepreneurs, data scientists, doctors, health IT innovators, and representatives from Washington gathered for the 4th Annual Health Datapalooza Conference in Washington DC.  What started 4 years ago as a 45 person gathering, now attracts almost 2000 participants. The two-day event included breakout sessions and app demos that explored innovative ways to leverage the opening of government health data to engage patients, improve clinical outcomes, and (if done right) bend the health cost curve.

The various panels at the Conference highlighted four key drivers toward re-imagining how we provide and govern health care:

1. Cost: Open health data may spur innovations that have the potential to improve the quality of care delivered while reducing costs. In the United States, National Healthcare Expenditure is hovering around $3 trillion. The United States spends more on health per capita than any other country by a sizeable margin and yet ranks poorly in both health and quality of services—innovations that improve quality and drive down costs have an eager market.  A potential of the use of open health data includes clinical decision support through technologies that provide advanced analytics at the point of care. For example, Humedica Mindshare helps providers identify high-risk patients and target resources accordingly.

2. Policy: Policy and legislative frameworks are enabling technological changes in how health care is provided and paid for. During Monday’s Plenary, StartUp Health CEO Steve Krein declared the current moment to be “the most important decade in healthcare” and elaborated on some of the forces that have aligned to make this possible, including the Patient Protection and Affordable Care Act (“ACA”) and unprecedented access to data and experts. The ACA’s transformative power was echoed throughout the conference with particular emphasis on how reform-supported payment models  catalyzed the institutional restructuring necessary to improve clinical outcomes as well as coordination between caregivers. During The Kojo Nnamdi Show, Health Care in Transition: Fee for Service vs. Pay for Performance recorded on Tuesday, Bob Kocher, Partner at Venrock, underscored the importance of new payment models as drivers of innovation. Kocher, a key architect of the ACA, stated that one of the aspirations of the reform was to “stop paying for all the ingredients and start paying for meals.” He later continued, “we are shifting towards things like accountable care organizations, like patient centered medical homes, like capitation, where doctors are paid a fixed amount and then they can reengineer the system to be more efficient.

3. Open Data: Calls for more transparency from patients and policymakers are accelerating health sector institutional innovation. In her brief keynote, Secretary Sebelius affirmed, “we are a great believer that unlocking our data, turning it over to those of you that know how to formulate that data for policymakers and providers, is the best possible thing to do.” Representatives from the UK shared their commitment to open health data declaring transparency and participation the, “secret sauce for world class patient services.” When asked to elaborate on the potential of transparency in health care, NHS Information Centre Director Mark Davies pointed to an instance where a local community improved uptake of diabetes screening services by 285% in 6 weeks. He commented that the NHS delivered “well-packaged” information and key change-agents were called upon to design solutions. He described the story as a “dramatic illustration of the power of the crowd” and concluded, “the people who are real experts are individual patients and we need to tap into that wisdom and we will be fine…this requires a level of transparency and braveness in terms of opening up data.”

4. Patient Engagement: Improvements in health care rely on engaged patients and communities. The most talked about driver for change throughout the conference was the power of patients. United States Chief Technology Officer Todd Park and others quoted health strategist Leonard Kish’s “patient engagement is the blockbuster drug of the 21st century,” and several exhibitors displayed products designed to help people monitor their health and habits. For instance, both BodyMedia and the Kinsa Smart Thermometer empower patients with real-time data—the former focuses on personal behavior and the latter on illness and community health.

There is clear consensus that greater patient engagement must be a guiding principal for how we move forward with reimagining health care. And yet, the United States has a ways to go when it comes to inspiring the level of engagement necessary to put patients in charge of not just their personal care but also the entire health ecosystem. In addition to restructuring health care delivery models, health care leaders across industries must take on the challenge of designing new methods to capture and evaluate the human experience of health and care. While health data is the bedrock for health innovation, to design a patient-centered health system we must start with the people not the data.

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