California public health leaders are joining an open data movement that is igniting enthusiasm nationwide for its potential to improve health care delivery.
The hope is that health care policymakers, tech-savvy entrepreneurs, advocacy groups, coders – or anybody with a computer and Internet access – will mine the data to identify gaps, and fixes, in California’s public and private health care systems.
“It is critical that we make effective use of the data we collect,” said Michael Wilkening of the state Department of Health and Human Services Agency. “We want to focus on what is possible and generate genuine enthusiasm for movement toward … better utilization of data, information sharing and interoperability to help us improve the health and well-being of our communities.”
State officials, joined by private consultants and backers from the California Health Care Foundation, announced their about-face this week at the second annual Open Data Fest in Sacramento. At the first such conference, authorities balked at opening their carefully guarded vaults of meticulously collected information on health care outcomes among Californians.
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In the year since, California officials began to shed their skepticism, which was fueled by worries that publishing data online might expose the medical records of individuals. The clincher was watching New York state’s successful rollout of its open data portal, followed by the federal government urging that other states follow suit.
The state’s effort is in its formative stage, said Daniel Stein, co-founder of Stewards of Change, the organization that, with funding from the California Health Care Foundation, set the tone and pace for forward movement during this week’s Open Data Fest.
“We’ve started working on the question of ‘how do you get more data in the hands of the people,’” Stein said. “California has mountains of information not easily consumable or easily combined for analysis. ”
The Open Data Portal is up and running at the website of the California Department of Public Health. Wilkening said the portal will expand into a vast repository of information to help people make better-informed health care decisions and more easily navigate bureaucracies.
The template for revealing data on hospital patient outcomes comes from within the 2,000-page Affordable Care Act, which requires the federal Centers of Medicare and Medicaid, the nation’s largest financer of health care services, to post ratings of hospital safety and performance.
The slew of data uploaded by the state last month includes 2012 asthma emergency department rates by ZIP code, age group and county; newborn screening disorders are sorted by region, race and ethnicity; and a site within the portal pinpoints the location of stores and markets that accept payments from the Women Infants and Children, or WIC, government assistance program.
Other tables show locations of health care facilities and their services; birth weights by ZIP code, mother’s age, and race; and a count of individuals living with HIV and AIDS. Additional data sets track West Nile virus cases from 2006 to the present; and school immunization rates in child care facilities, kindergarten and seventh grades.
For levity, the site even ranks the most popular baby names from 2009 to 2013.
“The value of open data is its potential to put needed data in the hands of those who can do something with it, such as coders, journalists, advocacy organizations and policymakers,” said Andy Krakov, of the California Health Care Foundation. “Government alone can’t be responsible for reaching all the people who can develop apps, visualizations, ways to improve health care. The long-term benefit is to raise awareness – and data has great potential for exposing what needs to be fixed.”
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Links to the datasets