Standards for Everyday Life: Integrating Emerging Health Data to Advance Precision Medicine
Kevin Chaney, MGS; Tracy Okubo, PMP; Ida Sim, PhD, MD and Teresa Zayas Cabán | April 9, 2020
We know SDOH—the conditions in which people live, learn, work, and play—impact our health, delivery of care, and coordination of services in many ways. However, SDOH data are often captured outside the healthcare setting, and this information is not shared consistently during the course of care. Meanwhile, the increasing use of sensors and wearables provides a unique opportunity to capture “care between care,” allowing patients, caregivers, and clinicians to monitor health status and adjust treatment as needed. These data can also help researchers answer questions and inform development of new treatments that could lead to better health outcomes.
Standards for on-the-Go Health Data
To ease sharing and use of mobile health, sensor, and wearable data, ONC is advancing standards development by collaborating with Dr. Ida Sim, co-founder of Open mHealth, and other organizations accelerating work in this area, including Personal Health Connected Alliance, Integrating the Healthcare Enterprise (IHE) International, Health Level Seven International® (HL7®), and the Institute of Electrical and Electronics Engineers. Open mHealth has worked to harmonize mobile, sensor, and wearable data with the HL7 Fast Healthcare Interoperability Resources® (FHIR®) standard.
This new ONC project aims to standardize the collection and sharing of remotely collected vital sign data. In particular, ONC will be collaborating with relevant stakeholders to validate the technical ability to share vital sign data through the Open mHealth pathway to an electronic health record (EHR) system via HL7 FHIR.
Open mHealth is excited to work with ONC to advance specifications for open mobile health data standards and the use of open standardized application programming interfaces (APIs). As we develop schemas, we are also actively compatible with FHIR to serve both the health IT and the broader technology communities.
–Dr. Ida Sim, Open mHealth Co-Founder
Standards for SDOH Data
The Advancing Standards for Precision Medicine project is also leveraging digital tools and questionnaires to advance standardized collection of SDOH data. ONC is collaborating with Fenway Health and its EHR developer, athenahealth, to encode patient-reported outcomes (PROs), which also capture SDOH data elements—such as housing, transportation, food security, and income—using the HL7® FHIR® PRO implementation guide. These data will be captured via an assessment tool using the IHE Assessment Collection and Data Capture (ACDC) profile. This profile allows developers to provide healthcare teams with digital instruments, tools, and questionnaires using a common interface to support exchange of standardized SDOH data elements. Demonstrating standardized data capture for one assessment tool will help establish the technical feasibility of using a common standard to represent assessment results. Findings from this project will further ACDC development and implementation and also advance SDOH capture. This project informs ONC’s efforts to develop electronically captured, used, and exchanged interoperable SDOH data as shown in the ONC Health IT Certification Program and “Social, Psychological and Behavioral Data” section of the ONC Interoperability Standards Advisory (ISA).
Ultimately, the Advancing Standards for Precision Medicine project aims to expand the kinds of data that can be integrated into EHRs, creating a more complete picture of patients’ health status and outcomes. This information can help researchers make new discoveries and help providers deliver more personalized, effective, and coordinated care.
For future updates on ONC’s PMI activities: https://www.healthit.gov/topic/precision-medicine
For updates on this project: https://www.healthit.gov/topic/advancing-standards-precision-medicine