AMIA Statement on NIH Data Sharing Policy

Tuesday, November 12, 2019

The following statement was released today by Douglas B. Fridsma, MD, PhD, FACP, FACMI, AMIA President and CEO, regarding the NIH Data Sharing Policy:

With the private sector advancing data sharing and interoperability, AMIA is disappointed with the recently proposed NIH data sharing policy. This policy represents a step backwards at a time when there is exponential growth in the amount of scientific data for research and the need to leverage large data sets to advance cures for disease. As proposed, this draft policy imposes a check-the-box requirement that will do little to modernize the 15-year-old NIH data sharing policy, only making the task of managing and leveraging scientific data for supplemental use even more difficult.
 
Rather than limit data sharing plans to two pages or a “just-in-time” review that happens after funding decisions are made, the NIH must take a science-based approach to data sharing and take a position of leadership to maximize the value of data. Data sharing should be a scorable requirement for any researcher who seeks public funds. The NIH has an opportunity and an obligation to use this policy to break down long-standing data silos in biomedical research, while ushering in an era of data-driven discovery, continuous learning and breakthroughs in treatment.
 
We’re hopeful that the NIH will reconsider input from the informatics community and establish a final proposal that better reflects FAIR (Findable, Accessible, Interoperable, and Re-usable) data principles, better leverages tax-payer funded data to advance new research initiatives, and makes sharing data a requirement – not an afterthought – to research proposals. We all deserve to benefit in the downstream utility of NIH research.