The Health Data Revolution Has Begun
Leading government health organizations across America are sharing valuable health data that fuels business innovation, accelerates research, and improves transparency in the marketplace. They are publishing machine-readable data and APIs to better serve researchers and developers, and using data visualizations and dashboards to explain complex health issues to policy makers, the media, and the public. Why is this important? By making data easier to find, access, and use, these efforts are creating a new “health data economy” that is leading to improved quality, reduced costs, and increased transparency in the market.
Three organizations stand out as pioneering members of the health data economy: the New York State Department of Health, the Centers for Medicaid and Medicare Services, and the Department of Health and Human Services. Each one has opened up specific types of data and supported greater health data transparency and access.
The New York State Department of Health (DOH) has been making it easier for New Yorkers to find and use state health information. Its open data website, Health Data NY, launched in March 2013 with data about restaurant inspections, hospital bed availability, and hospital-acquired infection rates. The site has since added even more health information, undergone a redesign, and won a national innovation award at the annual Health Datapalooza held in Washington, DC. What is New York doing right?
Health Data NY is the first state-run open data site in the U.S. dedicated exclusively to health data. It is part of Governor Cuomo’s data transparency initiative, Open NY. And, Health Data NY doesn’t just post spreadsheets of data. It offers comprehensive metadata and visualizations to ensure users understand the data. Most of the data on the site has preset filtering and sorting functionality, which assists users with analyzing the data.
This improved transparency helps New York State communicate to its citizens about how state programs are making an impact, and helps those citizens hold the state accountable for its health policies and services. New Yorkers can compare themselves to residents of other states, as well as review local data by county or region, highlighting issues like obesity and environmental toxicity. One of the most popular datasets New York offers is their “Genealogical Death Records Index,” allowing searches on deaths in the state since 1957 with data available about age, gender, descendants, and more.
Perhaps most important, all of the data on Health Data NY is API-enabled and there is a page of featured datasets for developers to focus on and use to create apps. The Health Data NY team hosts a Health Innovation Challenge every year, awarding tens of thousands of dollars to teams that come up with useful technologies using open health data. As more citizens engage with the data, Health Data NY adds more datasets. There are currently more than 425 datasets on the portal and they have been viewed more than 7 million times.
An Open Health Services Market
As the biggest single payer for health care in the U.S., the Centers for Medicare and Medicaid Services (CMS) is playing a leading role in making the costs of healthcare more transparent and easier to compare across geographies and providers. Its sites, data.cms.gov and data.medicare.gov, share data on the costs for procedures at different hospitals, as well as data on quality and efficacy, such as readmission rates by facility within 30 days after discharge.
The release of data is a critical component of CMS’s strategy to drive improvements in the U.S. health care system. "Data transparency is a key aspect of transformation of the health care delivery system,” says CMS Administrator Marilyn Tavenner.
By improving the availability of data on cost and quality, CMS has catalyzed competition in a largely opaque market. Their open data sites empower both consumers and payers and provide information in a variety of formats that serve many audiences. For example, access to the raw, machine-readable data available behind any visualization allows sophisticated users, such as researchers and data scientists, do in-depth analysis. It also allows private sector providers to benchmark themselves and understand how they compare against their competitors, hospitals, insurance companies, and individual providers.
Under the Tavenner’s leadership, CMS has made releasing data a key part of its strategy to make the US healthcare system more transparent, affordable, and accountable. CMS has been releasing cost and quality data to the public domain since 2011.
“Data is the lifeblood of our healthcare system, and for too long it has not been optimized by its full potential,” says Tavenner.
The media has noticed this effort toward greater transparency. The Wall Street Journal, Bloomberg, and The New York Times have all covered the story, with The New York Times producing an especially attention-grabbing article titled, “Hospital Billing Varies Wildly, Government Data Shows.” The media attention continues and has sparked debates about the data and health policy, exactly the result CMS sought from sharing it. The 429 datasets hosted on the CMS portals have been viewed nearly 48 million times and CMS’s APIs have served over 33 million requests to power health websites and apps using CMS data.
Educating and Uniting the Community
The US Department of Health and Human Services (HHS) collects a wide range of measures about health outcomes and the health care system. In 2012, the agency decided to make this data more accessible to everyday citizens by creating an interactive, data-driven dashboard for consumers featuring more than 350 health-related measures in 10 topic areas.
Called the Health System Measurement Project (HSMP), HealthMeasures.aspe.hhs.gov encourages engagement on critical U.S. health system indicators. It presents national trend data with plain-language descriptions, as well as detailed views broken out by population characteristics such as age, sex, income level, and insurance coverage status. The data is collected from multiple federal government agencies.
One example of valuable public health data the HSMP site offers in multiple formats is the “Percentage of People Who Reported Difficulty Seeing a Specialist.” A common complaint among American health consumers, the data is relevant and interesting to a broad audience. Site visitors see a bar chart of percentages spanning 2000 to 2011 for the entire U.S., making it easy for the media or informed consumers to spot trends. Then, those who wish to do further analysis, perhaps by education level, geographic location, or gender, can move beyond those charts and view or download the source data for the visualizations.
By using the latest technologies available for data sharing, HHS has created a centralized site that breaks down data silos between agencies and encourages entrepreneurs and developers to get creative by offering API-enabled, comprehensive, machine-readable data. In addition, all HHS data is available at the annual Health Datapalooza hosted annually by the White House and other federal groups in Washington, D.C.
A Health Revolution Fueled by Data
Many industry leaders believe that open data offers the most cost-effective way to improve America’s health care system. Instead of reserving data for highly paid, in-house analysts, open data allows any interested citizen with an Internet connection to access up-to-date, raw, machine-readable data, analyze it, and share their conclusions with the world. In the words of U.S. CTO Todd Park, “The vision is to stimulate a rising tide of innovation across the country - grassroots, decentralized, self-propelled, fantastic - that leverages our health data as fuel to help improve health and healthcare in America."