My grandfather might still be here were it not for how electronic health records exist in a silo.
As an incoming stroke alert, the ambulance would soon bring him to a hospital system he had never been to. Unaware that he was on a blood thinner, their well-meaning thrombolysis converted his thrombotic stroke to a devastating hemorrhagic death sentence. But how could something like this even happen?
The electronic health record (EHR) was introduced in the 1950s when hospital systems began to explore computer mainframes to house patient records. Systems to integrate basic patient information were first developed in large centers, but they were costly and not widely adopted. By 1979, hospitals began to adopt electronic systems for administrative tasks such as billing, but a greater barrier was systematic inability for programs to communicate, making interoperability nonexistent.
Policy eventually drove acceleration when in 2009, governmental intervention passed the Health Information Technology for Economic and Clinical Health (HITECH) Act as part of the stimulus package. This law invested billions of dollars into health IT and incentivized physicians and hospitals to adopt EHRs. By 2008, about 10 percent of hospitals had basic EHR functions. By 2015, over 90 percent of hospital systems had adopted certified EHRs. Present-day hospital functions rely on an integrated EHR for optimal coordination of care, safer prescribing and ordering infrastructure, instant access to patient data, and the opportunity for population health research. But something from the 1960s tagged along as an unwanted side effect: the painfully poor interoperability between systems.
Our grand technological advancements perpetuated medical error by withholding seamless interfacing between systems, eventually furthering patient morbidity and mortality. But the real question everyone should be asking is why? Why don’t we have a nationalized approach to seamlessly integrate health care documentation systems? The short answer is because of how our health care system is structured with laws inhibiting centralization. The long answer is complex and nuanced, so let’s take a deeper dive into current barriers and potential remedies.
1. Health care fragmentation and cost
Longstanding independence of hospital systems from private practices and clinics removes a singular authority to manage all patient care. Without a national health service, the divide is paid for by various insurers, leaving medical records as the responsibility of individual hospital systems and physician groups. Moreover, building and maintaining a national secure database for hundreds of millions of patients is not only technically complex, it’s expensive. As current vendors use different communication formats, starting with expansion of national registries in high-impact areas like prescriptions and vaccines would allow federal agencies time to build the infrastructure to enforce universal standards across all vendors. Especially the generation of emergency-access systems for important health data such as allergies, medications, and diagnoses which should be instantly available to health care providers. To enhance compliance, certification of health record systems could be tied to insurance eligibility. Regarding cost, federal subsidies must be created for smaller health care systems (rural clinics and hospitals) to upgrade tech. Financial support and phased modernization could tackle early hurdles of infrastructure and cost complexities.
2. Law and policy
The U.S. has attempted to link systems through data-sharing networks with collaborative efforts promoted through the Office of the National Coordinator for Health Information Technology, but health information exchange has to be legally supported and enforced prior to centralization. State-by-state variation in health information and system registries (immunizations, newborn screenings) further complicates an operational and federal-level national database. Creation of a federal baseline for standard health data exchange could mitigate inconsistent rules across state lines. In 2016, the 21st Century Cures Act was signed into law to accelerate modernization and advance precision medicine. A central pillar called for development of standardization elements and programming interfaces so clinicians and patients could better coordinate care. Though written into public law, participation has yet to become mandatory, so again, governmental agencies could require data portability by tying reimbursement to participation.
3. Cultural fears
A deep and worsening mistrust in our health care system and in centralized databases furthers the divide as patients favor individual privacy. Despite HIPAA privacy laws setting strict limits on how patient data can be shared or accessed, people fear governmental access to and breaches of their personal health information. Fear of data misuse and surveillance requires an updated HIPAA for our modern data era as it was devised prior to the advent of artificial intelligence and cloud computing. Patient control with consent systems could dictate who sees what in real time. Enhancing privacy-preserving technologies while serving stronger penalties for misuse could alleviate real patient concerns of information breach.
It’s not that the U.S. can’t build a national EHR. It’s that structural, economic, legal, and cultural factors have led to a decentralized approach instead of a single unified system. To reduce morbidity and mortality, we need a federally mandated, patient-controlled, and standardized national health data structure, similar to how many banks function on one interoperable network. The truth is, losing my grandfather hurt deeply, but the thought of living in 2026 without systemic operability of essential patient health data will hurt many more than him.
Gabriella Dauer is a pediatrician.
