The COVID-19 pandemic has encouraged more institutions to share healthcare data, but barriers need to be overcome to make data sharing more commonplace, experts said at an online health data event sponsored by the National Academy of Medicine (NAM).
“In many ways the pandemic itself was a use case for data sharing and there were many lessons learned,” said Nakela Cook, MD, MPH, executive director of the Patient-Centered Outcomes Research Institute, at the event on Thursday. “What we probably knew even before the pandemic is that data sharing within and across sectors is really feasible, and it’s not prohibited by technical issues — it’s probably prohibited more by issues of misaligned incentives and ethical, social, and legal issues, which we know are really challenging to work through.”
Data sharing will require an infrastructure to support it, she continued. That infrastructure should “allow for standards that will promote interoperability, transparency, and data security.” In addition, “it’s going to need to include stakeholders — specifically communities and patients that will help generate solutions to the concerns of data use and misuse and privacy,” she added.
One of the biggest barriers to data sharing is a lack of trust, said Sarah Greene, MPH, senior advisor to the NAM. She pointed to a report issued last fall by the NAM, which found that in addition to a lack of trust, other barriers included the cost of procuring data, concerns about what would be done with the information given, misalignment of financial and other penalties, and lack of understanding about the value of sharing data. “It’s incumbent on all stakeholders to take this on, and ensure that how we act with respect to health data engenders trust through our actions,” said Greene, who helped develop the report. “Even though a lot of the energy around health data sharing is focused on policy, this is really truly about people.”
In the wake of the pandemic, some providers are already sharing their data on COVID-19. David Meyers, MD, acting director of the Agency for Healthcare Research and Quality (AHRQ), described a project being undertaken by the HCA healthcare system, based in Nashville, Tennessee. The HCA’s COVID-19 Registry has collected data on more than 130,000 of its COVID patients since March 1, 2020.
“HCA came to AHRQ and said, ‘could we think with them about how they might create a long-term collaboration that would allow external researchers to come in and use the HCA data registry to expand the nation’s understanding and provide evidence on the better management of COVID-19,'” Meyers explained. “We jumped at this chance.”
With the help of AHRQ, “HCA offered these external researchers the opportunity to access a limited dataset derived from the full HCA data warehouse, and its registry, and then also to supplement that data as necessary for individual projects,” he continued. A key to the registry’s success is a memorandum of understanding that each institution signs with HCA; it governs how the data is to be used. The researchers then submit queries to the registry and “HCA checks to make sure that the query itself is safe, and then they get back their answer” from the dataset, Meyers said.
“I really believe that the project is working because of the urgency of the pandemic, allowing trust to be built quickly among HCA and these external research organizations,” Meyers noted, adding that the next step is to see whether the project can evolve into having other health systems contribute their data as well.
Another large health data sharing project is known as N3C — the National COVID Cohort Collaborative; it is sponsored by the National Center for Advancing Translational Sciences (NCATS), part of the NIH. “The goal of this group is so important,” said Kenneth Gersing, MD, the center’s director of informatics. To get the database going, NCATS said to its partnering institutions, “we want your data on people who have COVID — or ‘controls,’ people who have not had COVID — and we want their entire medical record, and we’d like it starting in January of 2018,” Gersing explained.
The project currently has 197 organizations using the data, which includes 1.2 million COVID patients’ electronic health records, as well as control patients who do not have COVID, for a total of about 5 million patients. “The data is very representative of the population, both rural and urban, socioeconomic, ethnicity, and race,” he said, noting that about 2,000 people have contributed to the database effort. “The pandemic is horrible, but it has also showed the best of humanity that this many people would work together.”
However, the database raises complex issues in terms of who can use what, he continued. For example, since the database also includes data from a variety of sources, suppose that some of the data being used by “Jane the investigator” on N3C comes from a cancer archive; does that mean Jane has access to the cancer archive in addition to N3C? “Does Jane have access to the cancer archive and does Jane have access to both of them at once, which is in and of itself a different question?” Gersing said.
Despite all the problems, the country has come a long way with health data in a short time, Tripathi added. “It was just 5 or 6 years ago that less than 50% of the country had functional electronic health records,” and now that number is much higher. “That doesn’t mean we don’t have problems to solve … I think the main challenge is the industry is so fragmented.”