The Office of the National Coordinator for Health IT should consider developing a Precision Medicine Initiative (PMI) addendum to its Interoperability Roadmap, the agency's Precision Medicine Task Force recommended this week.
The task force, at a joint meeting of ONC's Health IT Policy and Standards Committees, also said that the initiative should consider the use of "high-value, non-EHR sources" to gather more complete longitudinal data on participating patients. It added that the use of standard application programming interfaces (APIs), such as the Fast Healthcare Interoperability Resources standard, should be encouraged to source medication, lab and claims data.
The recommendations were a culmination of nine meetings by the task force from February through May.
"We realized after hearing a number of presentations that the volume complexity and new sources of data would require an emphasis on access and lots of query-based data exchanges versus just moving big data sets back and forth," said Deloitte Consulting's Andrew Wiesenthal, task force co-chair.
Wiesenthal noted that volumes of data inherent in those queries would be "well beyond" what is encountered in the current EHR ecosystem, and would include "lots of data sources" including information directly from participants.
"We've heard that over and over again, that it was going to be extremely valuable to have that kind of data," Wiesenthal said.
Leslie Kelly Hall of Healthwise, the task force's other co-chair, also talked about reciprocity--patients or organizations being able to get something back after giving information.
"We ... believed that we needed to accelerate the ability to return to individual patients aggregated information from multiple sources, and eventually research results," Hall said.
She added that the task force approached its meetings with the idea that the initiative is much larger than just document exchange.
"We needed to think more broadly about how information might be moved," she said.
The task force also recommended that the PMI define near-term means of access and accelerate individual access, and that the National Institutes of Health educate patients and providers of data access rights and uses.