Since turning its focus on researchers, HHS’ Office of the National Coordinator for Health Information Technology said it’s seen progress on interoperability goals in that space.
ONC has been coordinating development of data standards and IT infrastructure with other federal agencies after it released a policy agenda for researchers in February, said Teresa Zayas-Caban, ONC’s chief scientist.
The agenda was meant to address health IT infrastructure problems that have made it challenging for biomedical and health services researchers to capitalize on the growing amount of data held in electronic health record systems and consumer electronics. The new priorities included increasing data harmonization and improving access to interoperable health information.
“Our research is only as good as the data that we have,” said Kevin Chaney, a senior program manager at ONC, Wednesday during a monthly meeting of the Health Information Technology Advisory Committee.
ONC’s work included collaborating with National Institutes of Health’s All of Us Research Program to pilot data standards for sharing genomic information and opening a third round of funding under the agency’s Leading Edge Acceleration Projects in Health IT program to develop data sharing functions that support clinical care and research.
Zayas-Caban added that while the agenda focuses on research, its priorities align with other goals included in the ONC’s federal health IT strategic plan.
HITAC members during the meeting questioned how the agenda’s goals would include commitment to data privacy, particularly when it comes to using data from EHRs in research.
Tension between data sharing and data privacy has been a point of contention for many recent ONC projects, including the agency’s final interoperability rule.
Sheryl Turney, who leads data policy business administration teams at Anthem Blue Cross and Blue Shield, raised concerns about re-identification of data, or the potential for anonymized data to be matched with an individual.
Arien Malec, senior vice president of research and development at Change Healthcare, asked whether legal and ethical frameworks researchers use may need to be revamped as it becomes more common to pull real-world data from EHRs. “If we’re going to be using data more broadly we need to consider additional mechanisms to protect the rights of human subjects,” he said.
ONC is looking into those issues.
Zayas-Caban said the agenda includes recommendations on how to build patient consent into IT infrastructure that’s used to share data, such as suggestions on codifying data use agreements. The ONC’s also awarded funding to developing a consent resource using Fast Healthcare Interoperability Resources, or FHIR, data standards, she said.