Developers of electronic health records software, too, have recently launched or highlighted services that build on their role in the data ecosystem. Epic Systems Corp. recently launched its own research journal, which publishes studies based on data held in its EHR. Cerner Corp. has highlighted its “data-as-a-service” business as an opportunity for growth. And the data, analytics and care coordination segment was a highlight of Allscripts Healthcare Solutions’ 2020 fourth-quarter earnings.
It’s easier than ever to share and analyze patient data electronically, noted Dr. Ken Mandl, director of the computational health informatics program at Boston Children’s Hospital, noting the rise in EHR adoption among hospitals in the last decade, which has laid the foundation for these types of efforts. “The environment’s very rich for a lot of innovation,” Mandl said. “The next set of questions is how this innovation should happen.”
While all of the above efforts are working with patient data, they’re taking different approaches.
HCA’s approach, in which a set of institutions have the opportunity to propose study topics and work with HCA’s researchers, establishes a standard, repeatable way to evaluate proposals and share resources, said Dr. Jonathan Perlin, chief medical officer at HCA. That “new paradigm” for striking research partnerships could prove useful beyond COVID-19.
Only HCA has access to original patient data. That’s because the platform where researchers analyze the data lets researchers investigate questions and trends using obscured data, without providing access to the raw data itself. The platform, developed by DataFleets, isn’t connected to HCA’s internal clinical systems.
But even if data is secure, there’s still the question of how much patients expect to know about how their data is being used, and whether hospitals have a responsibility to let them know when their information is shared as part of a new research venture.
It’s unfair that patients don’t get to choose whether or not their data is shared when healthcare providers, researchers and companies strike such partnerships, according to Cynthia Fisher, a patient advocate and founder of PatientRightsAdvocate.org, since—even when de-identified—it’s still their data.
Providers should be transparent about how patient data is being used for research, make it easier for patients to opt-out of having their data shared, and share clinical findings from such studies back with patients, particularly if it’s useful for informing their care, Fisher said.
In cases when a company is profiting off of monetizing the data, Fisher asks, “Why isn’t the patient paid as part of that revenue stream? It’s their data.”
HCA does not charge researchers to access the COVID-19 dataset, and it’s not looking to make money from the consortium, according to Perlin.
The new approach to sharing data with the consortium was reviewed by an institutional review board, said an HCA spokesperson. He added that since the platform doesn’t provide direct access to patient data, it goes “beyond de-identifying the data in the traditional sense.”
Traditionally, de-identifying data just involves stripping it of 18 identifiers including names, birth dates, telephone numbers and Social Security numbers.