Stakeholders urge ONC to prioritize patient-generated data in interop efforts

The Connected Health Initiative, a coalition of industry stakeholders, weighed in this past week about a new U.S. Core Data for Interoperability draft from the Office of the National Coordinator for Health IT.  

CHI – whose steering committee includes the American Medical Association and Healthcare IT News parent company HIMSS along with Boston Children’s Hospital, GW Hospital, UC Davis and the University of New Orleans, among other industry heavy-hitters – urged ONC and other policymakers to adopt frameworks that encourage mobile health innovation and keep sensitive health data secure.  

“We believe ONC shares CHI’s vision of a seamless and interoperable healthcare ecosystem that leverages the power of PGHD and can be realized through the trusted framework,” said CHI in a letter addressed to National Coordinator Micky Tripathi.  

“We strongly encourage ONC to ensure their efforts prioritize data generated by patients outside the traditional care setting,” it continued.  


Patient-generated health data has become a font of potential insight, given the increase in mobile apps and wearables available to consumers over the past decade.   

To that end, in its letter, CHI stressed the need for interoperable exchange of health information throughout the care continuum.  

“A truly interoperable connected healthcare system includes patient engagement facilitated by [asynchronous technologies] … with open application programming interfaces that allow the integration of patient-generated health data into electronic health records,” wrote the coalition.   

ONC should work to ensure interoperability among EHR systems, medical devices and healthcare products, along with using industry standards to measure whether a system provides and uses data from various sources.  

It also noted the potential for patient-generated health data to reduce costs and improve patient care.  

“CHI urges ONC to support the use of health data and PGHD through artificial intelligence in research, health administration and operations, population health, practice delivery improvement, and direct clinical care,” the group wrote.  

When it comes to ONC’s USCDI version 3 draft specifically, CHI said it supported the expansion to use social determinants of health data considering patients’ lives outside the medical system.  

“CHI reiterates our request that ONC clarify the role of testing and/or certification in the success of the Trusted Exchange Framework and Common Agreement and in the establishment and development of the USCDI,” the coalition continued.  

It supported the coordination of the annual review process for the USCDI with the Interoperability Standards Advisory annual review process and pushed ONC to explain the relationship between the USCDI and ISA within the USCDI.  

And it asked ONC to include an average blood pressure level 2 data element in the USCDI v3.  

“Including ABP in the USCDI will make it easier for physicians and other healthcare providers to diagnose high blood pressure and assess blood pressure control more accurately,” said the letter.  


Researchers and industry leaders have pointed to the potential patient-generated data holds for potentially reducing health inequity, especially if the data sources are inoperable. At the same time, the information influx could contribute to clinician burnout.  

“In some cases, the [patient-generated health data] systems send the patient’s data directly to a physician, likely through their mobile phones or electronic messaging systems,” wrote Northwestern University researchers in an April 2021 study.  

“This mechanism, while efficient in urgent situations, may be burdensome to [providers] and can lead to fatigue if not all notifications are relevant.”  


“Providers of federal health plans and the beneficiaries they serve now expect access to seamless and secure patient data across the care continuum,” wrote CHI in its letter to ONC. “A scope that increasingly includes PGHD is also consistent with the Department of Health and Human Services’ health technology policy.”

Kat Jercich is senior editor of Healthcare IT News.
Twitter: @kjercich
Email: [email protected]
Healthcare IT News is a HIMSS Media publication.

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