As we continue to examine the value of open data in our blog series, we want to explicitly address the non-partisan nature of this issue. If you’ve been following along, you’ve likely picked up the theme that accessible data benefits all regardless of political party, but today’s post makes that point clear.
Take for example, the following public health interventions:
- Seat belt regulations have saved an estimated 15,000 lives annually
- Smoking cessation programs have saved an estimated 160,000 lives annually
- Mammography guidelines dropped the breast cancer death rate in women by 40%
What do these three examples have in common? These policies would not be in place without access to data. Access to data allows researchers to identify risks, test solutions, and build the evidence needed to shape policies that benefit the public good. Why must the issue of data access transcend party lines? Because it is ultimately a matter of life and death for all communities.
Previous posts in this series have highlighted the recent threats under the Trump Administration to open data access and its ongoing maintenance. But we would be remiss in failing to address that issues around data access aren’t new or unique to the Trump administration. In February 2024, CMS proposed changes to the Research Data Request and Access policies under the Biden administration that would have severely limited the health services research community's access to targeted data sets. AcademyHealth successfully advocated for CMS to reconsider the proposed changes, which delayed proposals to consider additional stakeholder feedback. More recently, AcademyHealth issued a response to CMS’s RFI on the topic of research data request and access policy changes. AcademyHealth has long advocated for increased accessibility to data across party lines.
Data access has historically been a bipartisan issue, with support from both Republican and Democratic leaders. In 2009, the NIH, under Obama’s administration, significantly expanded OpenData.gov, making scientific and clinical research data publicly available. In 2020, the Trump administration launched the CDC’s Public Health Data Modernization Initiative to create more standardized COVID-19 reporting mechanisms, improving data interoperability and real-time tracking. AcademyHealth’s successful advocacy efforts to ensure researchers had access to critical data sets with minimal technical and cost barriers garnered the support of Republican and Democratic Members of Congress. In an age where we increasingly find ourselves divided by party lines on otherwise bipartisan issues, let’s not make access to open data another one on the list.
As we look ahead, maintaining data access requires proactive, collaborative efforts. Policymakers, researchers, and advocacy organizations like AcademyHealth can take concrete steps: (1) develop bipartisan legislation protecting data accessibility, (2) create standardized protocols for data preservation across administration changes, and (3) build robust, platform-independent data repositories that can withstand political shifts. We must ensure that open data remains a protected, nonpartisan resource for future generations.
We urge both sides of the political spectrum to unite and advocate for preserving and restoring public data. There is no fight to be had. There are only lives to be saved.