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NY Health Data Draws Journalists, Researchers and Coders

BY Miranda Neubauer | Tuesday, December 17 2013

New York transparency advocates are praising the state's leadership role in making health data accessible as the New York State Department of Health is organizing a health-data focused Codeathon later this week.

The New York Times reported on the recently released dataset containing the median charges and costs for 1,400 conditions and procedures at all hospitals in the state from 2009 to 2011 by noting that the prices for procedures at some hospitals seemed to be inaccurately low and pointing out "extreme and unpredictable variations in cost, markups and charges" for childbirth cases and routine medical care of newborns. A follow-up piece suggested that some data was not transmitted properly from the hospital in question to the state through the Healthcare Association of New York State.

In a blog post, advocacy group Reinvent Albany writes that the uncovering of the inaccuracies illustrates the benefit of open data. "This is exactly what should happen when important government data sets are published and scrutinized by the press and experts," the group writes. "All big data sets contain errors, but the more eyeballs that are looking at that data, the faster those errors will be found and corrected; as a result, the data will become more accurate and useful. If no errors are being found, it means that open data is not being used, or that the interested public isn’t able to effectively re-use that data for analysis."

Crain's New York reported that two hospital trade groups had opposed the release of the data and expressed their concerns to DOH Commissioner Nirav Shah, arguing that the raw data would not be useful to consumers and create confusion.

An explanatory document provided by DOH Director of Public Affairs Bill Schwarz states that "consumers will benefit by having information on how much hospital care costs across different hospitals for various services," noting that previously, they did not have access to "information regarding what a hospital is charging them or their insurance company for a given procedure, or how much of a price difference there is among different hospitals, even within the same city. The data now presented provides that information to assist consumers in making informed health care choices."

In a webinar some weeks prior to releasing the data, Shah said the release of the data "was going to matter" by revealing the significant price discrepancies at different hospitals for the same procedures and same outcomes. As the state first began releasing more datasets, Shah said that "we targeted the datasets where we were getting lots of Freedom of Information Law requests," which he said can number between 5,000 and 7,000 requests a year. "In the first three months alone, we eliminated 700 of those requests."

In the webinar, Shah said those benefits as well as the value of having nursing home bed census data accessible in the aftermath of Hurricanes Irene and Sandy helped to change the culture in support of more data transparency within government. "One of the concerns is, well, if we release this data, it will make us look bad," Shah said during the webinar. "And yeah, that's the point. There are opportunities where you may need to fix things because the data shows trends or deficiencies in the work of your own state agencies. That is a conscious choice you have to make. We made that choice, it took some time for us to get there because we showed that the ultimate value was much greater than holding that data back."

The state released its first datasets to the public as part of the Maximizing Essential Tools for Research Innovation and eXcellence (METRIX) project in August 2011 and unveiled the platform in March 2013, coinciding with Governor Andrew Cuomo's broader open government efforts. In June, the department received the first annual Data Liberation Award from the Health Data Consortium, a public private organization focused on improving health care through the availability and innovative use of data and which sponsored the webinar Shah participated in. Other health data available from the state includes inpatient discharges, prevention indicators, and heart-related outcomes.

Cuomo ramped up his open government efforts this September by appointing as advisors Andrew Nicklin from New York City's Department of Information Technology and Telecommunications, James Hendler, former adviser and Theresa Pardo, director of the Center for Technology in Government (CTG) at the University at Albany

The DOH hopes to create more opportunities to make use of health data with the Codeathon at the end of this week. The initiative is taking place as part of the NY Innovates program this week that also includes a Developer Conference Tuesday and Wednesday targeted at IT workforces from government, education and the private sector on topics such as Big Data, APIs, GitHub and Ruby on Rails. The Department of Health and the New York State Office of Information Technology Services are organizing the program, with co-sponsors including among others the New York State Health Foundation, Microsoft, Redhat, AT&T, Dell, Intel and Cisco.

The Code-a-Thon will encourage developers, designers and data analysts to use the state's open data resources to create mobile and web-based tools to help address the combined issues of obesity and diabetes. The press release suggests tools that could help New Yorkers locate parks or other outdoor areas to increase their physical activity, or help them locate healthy food choices or other health interventions.

The program also includes "luminary talks" on various Open Data issues. Nicklin will moderate a panel including Shah, Hendler and Pardo. Dwayne Spradlin, CEO of the Health Data Consortium will also give a talk, as will Bryan Sivak, CTO of HHS. Another panel will feature Barbarah Cohn, New York's Chief Data Officer, Tanya Allard, director of Intergovernmental Affairs and Special Projects at the New York State Department of Health and Project Director of METRIX and Natalie Helbig, a senior research associate at the Center for Technology and Government.

In a brief interview, Helbig said she was particularly struck by how the state is reaching out to different stakeholders who can take advantage of the data, from application developers and researchers to community organizations and school districts on issues such as childhood obesity. Helbig noted that she recently participated in a one-day workshop on New York open health data at SUNY's Rockefeller Institute of Government.

"New York really is one of the leading states that is trying to put open data in the forefront and is building the backbone of working to get the agencies and practitioners talking about open data in the same ways," she said, noting the portal's incorporation of metadata and existence of a dedicated portal for health data, in contrast to some other state platforms. She also said the state was helping to build "communities of users" by including research questions with many of the data sets.