Expand Data Access!

In “The Real Returns on NIH’s Intramural Research” (Issues, Summer 2025), Jeffrey Alexander and Rossana Zetina-Beale only begin to scratch the surface by focusing on direct financial returns from quantifiable outputs such as patents and royalties. But I spent years as a data nerd in the agency’s intramural research program (IRP) and never produced a patent or generated royalties. My colleagues and I produced a more difficult to quantify, but highly valuable, return: research data.

The IRP is rich in data assets, and to maximize returns, the National Institutes of Health should reform the program to do more sharing. Like most federal programs, the IRP generates both open data (freely available) and controlled-access data (which require special access conditions). For example, clinical trial data on the drug remdesivir’s efficacy for COVID-19 are accessible to outside researchers through a controlled-access portal—AccessClinicalData@NIAID—and have been widely reused for new discoveries. A similar approach could be extended to other data assets now available only to IRP researchers, such as the Biomedical Translational Research Information System (BTRIS), which captures data from hundreds of IRP clinical trials, facilitating linkages across trials and patients that enhance discovery. Expanding access to datasets like BTRIS would maximize replicability, extend their utility, foster external collaboration, and significantly increase return on investment.

To be fair, NIH is making some headway in expanding access to IRP data. For instance, its updated Data Management and Sharing Policy (DMSP) applies to all IRP projects conducted since January 25, 2023. That’s great for making recent data assets publicly accessible, provided IRP leadership enforces reasonable timeframes for how long IRP principal investigators can embargo unpublished data from release. In my experience, the investigators are allowed to sit on data for years. The NIH has never stated how IRP researchers would be held to account for compliance with the DMSP.

Another issue is a lack of transparency within the IRP, as NIH does not disclose all the data assets it produces. Congress and President Trump intended to address this with the Open Government Data Act of 2018. The act and its implementation guidance require agencies to improve the discoverability of all agency data assets, even those not publicly available. To meet this expectation, NIH should establish a centralized catalog covering all IRP data assets, require all IRP principal investigators to take training on basic data management and data science principles, have them review data assets held by their labs, and update the catalog. The Department of Health and Human Services could then incorporate the catalog into its comprehensive inventory, maximizing transparency per the new HHS Living Open Data Plan.

Unlike the financial returns analyzed by Alexander and Zetina-Beale, it’s difficult to quantify the returns on public investment in the IRP’s data assets. Still, we know enough to see that expanding responsible access to those assets will ensure the public can reap the benefits of discovery and transparency in a more timely and accountable manner.

Christopher Steven Marcum