Connected care is the goal; disconnected care is the reality.1
The patchwork of the United States’ health care delivery is accentuated by fragmentation of information systems that silo populations and care settings and deepen disparities. Interoperability—ie, computer systems’ ability to exchange information and put it to use—has been on the minds of policy makers, technology leaders, electronic health record (EHR) vendors, and health systems for decades; however, significant challenges have hampered the nation’s progress toward true interoperability. As of 2014, less than half of nonfederal hospitals offered electronic queries of other organizations for patient health information.2 Here, we summarize the historical context and policy limitations that have led to information fragmentation and propose a path forward for informational continuity to improve US health care.
How We Got Here
In 1996, the Health Insurance Portability and Accountability Act (HIPAA) elevated security and privacy of patient data, standardizing what patient information was to be protected and how this had to be achieved. It took until 2004 for coordinated efforts, such as like the national health information technology (IT) network to be created by the Office of the National Coordinator for Health Information Technology (ONC). This was advanced in 2009 through the Health Information Technology for Economic and Clinical Health (HITECH) Act which incentivized EHR adoption. The HITECH Act also created health IT policies and standards and promoted electronic exchange of useful health information between patients and clinicians via what it termed meaningful use. The 21st Century Cures Act, passed in 2016, further encouraged collaboration across federal agencies and between public and private organizations to improve the quantity and quality of information exchange. In 2020, the ONC Cures Act defined conduct that would constitute information blocking, established technological standards for health IT developers, and identified the patient data that are required to be interoperable. However, challenges remain given that patient data have been treated as a commodity owned by EHR vendors, potentially leading to reluctance to share data due to a desire to maintain vendor market share as well as increasing barriers for smaller companies to enter the interoperability space.
Why It Matters
The COVID-19 pandemic has exposed gaps in our current information infrastructure, not only between disparate health systems but also between health systems and public health infrastructure and between health systems and their patients. These gaps predate COVID-19, but the pandemic has created momentum to reject the status quo.
Interoperability and robust health information exchanges (HIEs) are crucial to the evolution of US health care and public health. While HIEs—systems designed to electronically transmit health data between locations of care in a community, region, or beyond—have been lauded as a way to share information, their implementation is narrow, user interfaces are clunky, they may not contain useful information, and health professionals do not access them very often.3 In a review examining barriers and facilitators to HIE use among health professionals, incomplete data (eg, lack of progress notes) was cited as a major barrier to use.4 The aforementioned laws detailing what information must be shared and increasingly uniform technical standards for how to share it will help HIEs address some of these barriers.
If HIEs were better integrated into EHRs, had complete patient information, and were easier to navigate, the consequences would be profound. Waste may be significantly reduced: in 2018, nearly one-third of patients who saw a physician reported a breakdown in information exchange, including having to repeat a laboratory test or provide imaging results.2 Health disparities may also be reduced: in a study examining patient views on having access to their clinical notes, patients from minority racial and ethnic groups reported more confidence, more clarity, and feeling more actively encouraged by their clinical notes compared with White patients.5 Improved flow of information across settings of care facilitated by HIEs would likely reduce negative outcomes associated with fragmented care and may make health professional workflows smoother by improving communication between clinical settings and pharmacies, long-term care facilities, communities, and patients.
An Interoperable Future
As it stands, US health care is a patchwork of disconnected policies, facilities, and services. Disruptions in information continuity allow patients to fall through the cracks. This may be one reason why we have worse (and worsening) life expectancy and other health metrics than other industrialized countries, despite spending more on health care.6
However, more must be done, and legislation that appropriately incentivizes interoperability is needed and may return health and economic dividends. We propose 3 research and policy goals to bolster interoperability. First, implementation science and economic research are needed to identify the key barriers to information exchange across varied health care settings, to understand the tools that health care systems and professionals need to effectively use the data, and to gauge the return on investment of these efforts. Natural experiments comparing spending, savings, and outcomes at more interoperable vs less interoperable systems could inform our understanding of the benefits to both health care systems and patients. Second, policy makers should create a collaborative task force with representation from health care administrators, clinicians, public health experts, patients, and EHR vendors and use inputs to refine policy and budgetary support for state, regional, and national HIEs. Finally, there need to be market and economic incentives for EHR vendors to create user-friendly HIEs (and for hospitals to choose those EHRs), share data across platforms, and allow health systems to sustainably access and use the data in a meaningful way. This may require policy makers to intervene to develop incentives for health care systems and hospitals to adopt HIEs and for EHR vendors to share patient data (even with competitors) in the name of improved patient care.
As it stands now, the current state of uninteroperability lies between policies promoting interoperability and the forces of commerce pushing against it and between the sentiment that information sharing is good with the reality that health systems and professionals do not have the tools needed to access or use shared information meaningfully. Bold policies and innovative technologies that affect these tensions in a powerful way will be required to move US health care toward an interoperable future.
Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2021 Turbow S et al. JAMA Health Forum.
Corresponding Author: Sara Turbow, MD, MPH, Department of Medicine, Emory University School of Medicine, 49 Jesse Hill Jr Dr SE, Atlanta, GA 30303 (email@example.com).
Conflict of Interest Disclosures: Dr Turbow reported receiving grant support from Merck and the National Institutes of Health outside the submitted work. Dr Ali reported receiving grant support from Merck outside the submitted work. No other disclosures were reported.
Turbow S, Hollberg JR, Ali MK. Electronic Health Record Interoperability: How Did We Get Here and How Do We Move Forward? JAMA Health Forum. 2021;2(3):e210253. doi:10.1001/jamahealthforum.2021.0253
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