At the NIH Pragmatic Trials Collaboratory Steering Committee Meeting in May, we interviewed Dr. Adrian Hernandez about how to better promote data sharing. Hernandez is a co–principal investigator of the program’s Coordinating Center and the executive director of the Duke Clinical Research Institute.

“We have to change the incentive structure because we still have barriers for sharing data. It’s not being done as often as we need it to be, especially with healthcare system trials,” Hernandez said.

Data sharing is important because it increases transparency, reproducibility, and secondary uses of medical research and is good for society. It also has to potential to advance public health, maximize investment, accelerate learning, and foster collaboration.

One of the first steps to improving data sharing is to increase patient understanding and encourage participation.

People are unaware of what’s possible for reusing data—generating new ideas, tackling different health issues that have not been addressed. People don’t realize that their data can have an expansive use.

The incentives for data sharing are different for researchers, clinicians, and healthcare system leaders.

“For researchers, data sharing efforts could be more readily recognized by linking data sets to [digital object identifiers] in publications. Reuse of data can also be part of recognition for promotion and tenure,” Hernandez said. “For healthcare systems to be more engaged in data sharing, they can promote that they are trying to advance knowledge through research activities and by sharing data.”

The barriers to sharing data include lack of trust and the possibility of misuse.

“People get worried about their data being monetized without their permission, and there are concerns about privacy and being re-identified, and that this somehow will cause harm to people individually,” Hernandez said. He noted that the ethical responsibility to share data generated by publicly funded research must be balanced against the need to protect patient privacy and scientific integrity.

For more information, see the article on data sharing and embedded research in the Annals of Internal Medicine, in which authors from the NIH Collaboratory suggest that data sharing policies must not dissuade healthcare system participation. There is also a Living Textbook chapter on Data Sharing and Embedded Research.

In the days ahead, we will share more interviews with program leaders from the 2023 Steering Committee meeting. All of the materials from the 2023 Steering Committee meeting are now available.