Most people would be forgiven if they were unaware of the debate about whether an “electronic health record” should instead be a “comprehensive health record,” and whether an “EHR” should instead be a “CHR.” But the controversy is over much more than just a name. It reflects a debate over the goals of health information technology. Life, health, and healthcare are neither static nor siloed, but are constantly in motion, and one’s health data must be in motion, too. We need a connected health record.
In 2009, the Health Information Technology for Economic and Clinical Health (HITECH) Act launched a national program to transform healthcare and health information exchange from a system of paper records in silo after silo of file cabinets to nationwide adoption and use of “electronic health records.”
Nine years later, as health activities and use cases continue to broaden – including shared care planning and coordination, genomics and personalized medicine, population health and public health, remote monitoring and sensors – the construct of electronic health record as electronic filing cabinet remains deficient. Policymakers, clinicians, and patients recognize that an interoperable healthcare ecosystem requires far more than point-to-point, EHR-to-EHR connections. Our health and healthcare are hardly confined to the fifteen minutes in a clinical office visit, and accordingly, our healthcare ecosystem requires connectedness with patients and family caregivers, with social determinants of health, with non-clinical providers such as school clinics for our youth, and with community health centers.
In response, EHR vendors have undertaken to refresh and rebrand the “electronic health record” to a “comprehensive health record,” which collects and manages additional data and use cases.1 This concept misses the point. As critical data sources expand exponentially to include patient-generated health data and genomic data, shared care planning and coordination, family caregivers and non-clinical settings of healthcare, no electronic health record can be “comprehensive.” Interoperability is not and must not be defined by being able to pick up and move a giant digital stack of records from one hospital system to another, with the hope that the patient’s various providers will all be able to accumulate everything, like a cartoon snowball rolling downhill, into one “comprehensive” record. Rather, interoperability is a national priority precisely because no single vendor EHR system is comprehensive, and there must be interoperability across the myriad data types, sources, authorized users, and use cases.
Given this, we say “connected health record,” not comprehensive health record, and we are not alone.
The connected health record does not continue to define relevance, information, and healthcare by what’s locked in—and out—of the record, by whether it is in or out of a single “comprehensive” health record. Instead, the connected health record achieves true completeness by focusing on the dynamic conversation, teamwork, interconnections, and diverse data sources inherent in managing health and healthcare today. This notion of connected health records tracks the teamwork-oriented vision of a learning health system, with primary care physicians, patients, diverse specialists, hospitals, clinics, pharmacies, laboratories, public health registries, clinical research, etc., and new models of care such as accountable care organizations.
For example, a shared care plan is not a static, episodic “plan of care” buried in an EHR. Rather, it is a “multidimensional, person-centered health and care planning process facilitated by a dynamic, electronic platform that connects individuals, their family and other personal caregivers”2 so that all care team members can update the plan electronically in real time with inputs and outputs to and from a multitude of systems. In the world of the connected health record, a patient at home with cancer who gets a fever will have her temperature data transmitted to her primary care physician, her oncologist, her homecare nurse, and her family caregiver. Recommendations and changes in care plan from any one of those providers will be communicated to and accessible automatically for the entire care team.
A static, allegedly comprehensive health record misses the dynamics of an interactive, learning health system. Rather, patients, providers, population health agencies, registries, payers, researchers, social service agencies, community centers, and accountable care organizations all need interconnected systems and records.
Congress, the Office of the National Coordinator, and innovators have already been leading both policy and technology toward such a vision. For example:
- With the 2015 Edition of Certified Health Information Technology, ONC expanded beyond the certified electronic health record to a modular approach that opens and integrates access beyond a single EHR or vendor and supports care and practice settings beyond ambulatory and inpatient settings. Similarly, Meaningful Use Stage 3 and the 2015 Edition added open application programming interfaces (APIs) to provide external access and use of health information outside the EHR.
- The 21st Century Cures Act likewise envisioned a connected health record with its focus on interoperability as a national priority and on APIs to access, exchange, and use electronic health information outside the EHR without special effort.
- The National Quality Forum’s landmark Interoperability Measurement Framework in 2017 highlights the importance of interoperability across the continuum of care, not just EHR-to-EHR exchange. Real-world care delivery extends well beyond the reach of electronic health records to nonclinical settings, such as housing, community health centers, schools, social service agencies, and jails, as well as clinical settings. The framework includes measure concepts for patient-generated health data and social and environmental determinants of health, alongside measure concepts for the range of clinical data.
There are two additional trends that support a connected, rather than comprehensive, health record. First, a chorus of physicians and patients is crying out that EHR systems are already cumbersome and inefficient. Imagine how much worse this might become if EHR systems grow and grow to accommodate new use cases rather than focusing their energies on improving their core functions to be more user-friendly and to reflect the way modern healthcare is and will be practiced? Second, technological advances have led other industries to adopt an API-based model, in which modules, devices, and software from different vendors can easily connect. That way, each vendor can focus on what it does best, and the user can benefit from an ecosystem of technology and software that work seamlessly together.
And so we say “connected health record,” not comprehensive health record, and we are not alone.
Dr. Aaron Neinstein, is director, clinical informatics at University of California San Francisco. Mark Savage is director, health policy and Ed Martin is director, technology UCSF’s Center for Digital Health Innovation. This blog originally appeared on HealthStack.com.
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