OSTP: Changes needed to better share COVID data

Data sharing has been a crucial part of the global fight against the COVID-19 virus, but there are some hurdles that can slow the process down at federal agencies that collect that a lot of that data, according to one of the White House’s top tech experts.

While there have been exceptional efforts at federal agencies and research facilities to share the mountains of data they’re accumulating on the disease in the last few months, there are practical obstacles that can be tricky to navigate, said Dr. Lynne Parker, the administration's deputy CTO.

In March, Parker said, the White House Office of Science and Technology Policy began appealing to scientists and researchers from industry and academia to help open up their data for use by others, as well as help them deal with the deluge of research papers being generated. OSTP worked with several organizations, including the National Institutes of Health and Georgetown University, to release the COVID-19 Open Research Dataset (CORD-19) -- a collection of 35,000 scholarly papers on COVID-19 and other coronaviruses. The data deluge that spurred the dataset’s creation continues, she said, with 2,200 papers submitted in the last week.

The project has used artificial intelligence to help sort through all those papers and make them more accessible to researchers, she said in a presentation in a June 8 Data Coalition webinar.

The collective resolve to open up data is one of the most important parts of leveraging shared data to help solve problems, said Parker. Scalability, security and privacy are also big concerns for sharing the sensitive health associated with COVID-19 research, as well as other shared data, she added.

Regulations such as Health Insurance Portability and Accountability Act must be carefully considered when data is shared, Parker said, but those rules could be modified to allow sharing.

“We can look more broadly at the laws to use data,” she said. “For HIPAA, some people might want their data to be use in the fight against COVID-19. They ought to have the opportunity to do that, but the law doesn’t offer the option.”