UAlbany Researchers Examine Health Data Policies in the Biden-Harris Administration

ALBANY, N.Y. (Feb. 25, 2021) – As a new presidential administration commences, researchers at the University at Albany are analyzing the potential impact on health data policy and opportunities for improved access.

Writing in JAMA Health Forum, authors Erika Martin and Mila Gascó-Hernandez see renewed opportunities for growth and success if the Biden-Harris Administration follows the lead of past practices inaugurated under President Barack Obama.

"Starting with the 2009 Open Data Directive, the Obama White House catalyzed the development of federal, state, and municipal web-based platforms containing searchable government data available in multiple formats and with unlimited use and distribution rights," said Martin, an associate professor of Public Administration and Policy at the Rockefeller College of Public Affairs and Policy.

These platforms include the HealthData.gov federal data catalog, as well as state platforms such as Health Data NY and the California Health and Human Services Open Data Portal, and numerous city-based initiatives.

However during the Trump administration, data advocacy groups such as the Sunlight Foundation tracked the discontinuation of these efforts, which included removal of content and changes in access to federal data resources.

"The new Biden-Harris administration is encouraging for revival of open health data initiatives, given President Joseph Biden Jr.’s history of supporting health data initiatives, including open sharing of cancer research data, Kamala Harris’s leadership on California’s OpenJustice open data initiative, and the new administration’s public pledge to 'promote trust, transparency, common purpose, and accountability in our government,'" said Gascó-Hernandez, a research associate professor at Rockefeller College and associate research director at UAlbany’s Center for Technology in Government.

Open data’s implicit logic is that beyond improving government transparency, diverse users will leverage the data for new insights and applications to empower health care consumers and improve population health.

Martin and Gascó-Hernandez cite cases such as the San Francisco Department of Health’s collaboration with Yelp on food safety data, New York’s interactive query tools to locate quality and safety information on health care providers and information on COVID-19–related school closures and positive test results, and Kansas City’s current collaborations with developers to connect residents with free sexual health resources.

However, the authors note that despite the availability of open data platforms, their full value has not yet been realized.

"Many jurisdictions have not yet evolved from simply posting some data sets on websites toward an 'Open Data 2.0' phase with robust open data platforms employing interactive user-friendly designs, extensive repositories of data in open formats, and intentional engagement of data users to encourage data use," said Martin. "While the Biden-Harris administration presents an opportunity for enhanced access to and use of government health data, history provides important lessons on challenges that must be addressed to enable the success of open data initiatives."

Martin and Gascó-Hernandez point to key strategies for deploying successful open health data initiatives. These include the political will to enact change, including sufficient funding for public health agencies to collect and process high-quality data, resources for open data publication activities and making the publication of open data a routine public health activity.

In order to succeed once enacted, open data initiatives require intentional engagement of diverse users to promote use. The authors note that most data users outside the research and software development communities do not have sufficient technical skills to become aware of open data, imagine ways that data can be used, assess their quality and fitness for use, and manipulate them for their intended purpose.

"Open data has been described as 'the 21st century’s new raw material,' with potential to hold governments accountable, help citizens make better choices, improve the quality of public services, and encourage innovations that can ultimately improve the economy," said Gascó-Hernandez. "Given their previous work on open data and support for sharing health data, the Biden-Harris administration may be poised to make open data a core component of their policies to address the COVID-19 pandemic, health equity, the opioid crisis, the obesity epidemic, and other health priorities."

The authors see this as an opportunity that can position the United States to reap the full benefits of opening health data, although these efforts are unlikely to achieve the desired result without understanding and incorporating the lessons that have helped chart past success.