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In Plain Sight: Is Open Data Improving Our Health?

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In Plain Sight: Is Open Data Improving Our Health? CALIFORNIA HEALTHCARE FOUNDATION In Plain Sight: Is Open Data Improving Our Health? JANUARY 2015 Contents About the Author 3 Introduction Cheryl Wold, MPH, is an independent con- Understanding the Impact of Open Data sultant who provides strategic research and evaluation services to nonprofit and public- 5 Preventing Foodborne Illness in Chicago sector organizations. Previously, Cheryl was Innovation chief of the Health Assessment Unit in the Los Early Results Angeles County Public Health Department, where she directed the Los Angeles County 6 Childhood Obesity Surveillance in New York Health Survey and developed and dissemi- Innovation nated health indicators and data to guide Early Results health improvement activities. 8 Reducing Pedestrian Injuries in San Francisco About the Foundation Innovation The California HealthCare Foundation Early Results (CHCF) is leading the way to better health care for all Californians, particularly those 9 Public Reporting of Hospital-Acquired Infections whose needs are not well served by the Innovation and Early Results status quo. We work to ensure that people have access to the care they need, when California they need it, at a price they can afford. New York Going Forward CHCF informs policymakers and industry leaders, invests in ideas and innovations, 12 How Do We Evaluate Impact? and connects with changemakers to create a more responsive, patient-centered health 14 Acknowledgments care system. 15 Endnotes For more information, visit www.chcf.org. © 2015 California HealthCare Foundation California HealthCare Foundation 2 Introduction any in the health community believe that making Make a Business Case for Open Data” to “The Open data accessible to a broad swath of stakehold- Data Consumer’s Checklist” are examples of a growing Mers — including health practitioners, technology repository of resources to advance practices in the field.2 entrepreneurs, researchers, journalists, and government Two of these groups have made their resources publicly staff and officials — will catalyze innovations to improve available via GitHub, a web-based hosting service for the US health care system. software projects that is widely used by technologists but less well known among health data officials. This belief is affirmed by the enthusiasm at events showcasing innovative uses of open health data — the There has been a noticeable snowball effect. According Health Data Consortium’s annual Health Datapalooza, to an article by Emily Shaw of the Sunlight Foundation, California’s Open DataFest, and Illinois’s Putting Health the more health data are released by governments, the Data to Work, among others.1 These events attract thou- more data-fueled applications benefiting health care’s sands of participants who come to hear government “triple aim” (better quality, lower cost, and population officials discuss their work to make data more accessible, health) are generated.3 talk with experienced open data innovators about how to partner with entrepreneurs and civic-minded orga- For example, a ProPublica article by Charles Ornstein nizations, and observe vendors demonstrate tools for and Ryann Grochoswki Jones, “Top Billing: Meet the visualizing data or cloud services. Other types of events, Docs Who Charge Medicare Top Dollar for Office Visits,” such as code-a-thons and design challenges, take a more discusses how the Centers for Medicare & Medicaid hands-on approach and encourage the public to contrib- Services’ release of hospital and physician payment data ute to the body of innovative uses of data. All of these invited exploration into how to address the wide cost events help create and support a network, or ecosystem, variation that was revealed.4 of data use and innovation. And an article by Erika G. Martin, Natalie Helbig, and In the spirit of being open with information, those putting Nirav R. Shah, “Liberating Data to Transform Health Care: open data to use are also eager to share what they’ve New York’s Open Data Experience,” published in JAMA learned. The Open Data Handbooks from California in 2014, referenced the opening of the clinical registry of (PDF) and New York State and the nonprofit Open Data cardiac surgery and subsequent efforts to reduce mortal- Institute’s online guides on topics ranging from “How to ity and other poor outcomes in New York as compelling evidence in the case for opening access to data.5 Applications using government datasets also empower Open Health Data Initiatives consumers with new ways to take a more active role in Initiatives to promote open data — the dissemina- maintaining their own health. For example, people can tion of data in machine-readable formats — aim to now compare health care quality among physicians and accelerate innovative uses of information. It worked nursing homes, find information about clinical trials and with weather and global positioning system data, so why not health? community services, manage health behaviors and medi- cation, and learn about food safety and product recalls.6 This series of case studies describes open health data initiatives from across the country and looks at the impact they are making on people’s health and Understanding the Impact of well-being. They include a pedestrian safety effort in San Francisco; childhood obesity prevention in New Open Data York; and the public reporting of hospital-acquired But is opening the door to health data having an impact infections. on health? Can we pinpoint where open health data These case studies were originally published online initiatives are resulting in observable improvements in in installments from January through March 2015. outcomes, policies, practices, or behaviors? How are such improvements being measured? In Plain Sight: Is Open Data Improving Our Health? 3 These questions were posed to local and state health much easier to publish compared to datasets that involve officials engaged in open data efforts. The most con- personal information, even though these datasets would crete lessons they’ve learned so far focus on operational be aggregated, cleansed of any identifying data, or both. aspects of the work — for example, how best to motivate government agencies to release their data and how to External partnerships are important. Interviewees involve others outside of government — and the most agreed that another key to success was the develop- common outcome measures are narrowly focused and ment of external partnerships, such as those formed with process related. Organizations are tracking the type and technical and nontechnical stakeholders like universities, number of datasets released, number of downloads, and private companies, and nonprofits. These partnerships innovative applications using the data. In other words, sometimes occurred spontaneously at “hack nights” or while the field is doing a good job of documenting the civic coding events, and they also resulted from planned uses of open data, it is still lacking an understanding of outreach, such as organized forums. Such exchanges the long-term impact of open health data. often led to creative uses of the data and brought new expertise to the table. It will take time to measure impact from this relatively new field. Yet even at this stage, several common lessons Audiences’ varying needs must be understood. Many emerged from the interviews with health officials, which of those interviewed emphasized the importance of together provide some early signals as to how open data learning how different audiences want to use the data might be assessed: and involving those audiences in the project develop- ment process. Since first releases are rarely perfect, the Most view their open data work as in its early stages. iterative process of preparing and publishing datasets Health officials would like to understand how data are offers multiple opportunities for input from a wide range being used and if those uses have resulted in specific of stakeholders. health impacts, but few have studied those outcomes. Interviewees talked about the datasets that were being For example, the general public may be interested in used for specific public health or health care improve- summary information, such as the name of the restaurant ment projects, but the work was either not yet far enough with a letter grade as an overall health score, along with along to have generated outcomes or to have been eval- a map or other visualization of the data. Researchers or uated systematically. Process outcomes, such as studies data analysts, however, may want access to trend data of the uptake and use of open data across various health and detailed information on the types of health violations. datasets, weren’t always collected or examined. All of Open data initiatives have adapted over time to include those interviewed expressed great interest in hearing steps that assure the appropriate use of the information about what others were doing to track outcomes. through complete metadata and other documentation. Agency buy-in takes time. All of those interviewed Potential internal efficiencies may also have costs. emphasized that liberating datasets at the state and local Open data efforts were seen as positively impacting gov- level required a lot of work that was sometimes impeded ernment services, making them more responsive to public by bureaucratic processes, internal resistance, or simply needs, and creating valuable efficiencies — for example, a lack of resources. Several health officials were currently by encouraging self-service through
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