Written by: Liz Lewis is director of product at CommonWell Health Alliance. Jill DeGraff is the senior vice president of privacy, regulatory, affairs and compliance for b.well. Article posted by Fierce Healthcare.
In the complex world of interoperability, ensuring that the right patient data is accessible across healthcare providers is not just a technical challenge, it’s also a lifeline for patients, especially those navigating complex medical journeys.
I (Liz Lewis) experienced this firsthand in my late 20s. During nearly a decade living in Atlanta, I was diagnosed with asthma, welcomed my first child, and later faced a melanoma diagnosis that required surgery and a rigorous dermatology follow-up plan. Then came a major move: more than 450 miles away to North Carolina. With new providers to establish and years of medical records to transfer, I quickly realized that if I wanted all the records that matter to be available for my new care teams, I would need to be equipped to access and direct those records myself.
Solutions like Individual Access Services (IAS) (the ability for patients to directly access their own health information) within the Trusted Exchange Framework and Common Agreement (TEFCA) are designed to give patients like me more agency and control in my health journey. The next frontier lies in leveraging FHIR (Fast Healthcare Interoperability Resources)—the globally recognized standard for exchanging health information across computer systems—to expand and enhance these capabilities. However, after testing the first FHIR-based approach to IAS exchange within TEFCA, I’m left to wonder: Is seamless patient data interoperability still further off than we think?
Patients want access to their medical records
Patients gaining access to their records is the next horizon in interoperability. Surveys show there is an appetite among healthcare consumers for obtaining and managing their health data electronically. At least 61% of survey respondents want to access their medical records on mobile device apps or through an online patient portal, especially specific kinds of health data, like laboratory test results (89%); their history of medical conditions and past diagnoses (88%); treatment plans (87%); and X-rays, CAT scans, or MRIs (87%). Perhaps as a result of the COVID-19 pandemic, many patients (87% of survey respondents) wanted access to their immunization records.
While patient portals offer one way for patients to view their records, the 21st Century Cures Act of 2016 (Cures Act) went further by requiring vendors of electronic health record systems (EHRs) to offer Patient Access APIs so patients could manage their records from all their healthcare providers in one place. More logins for records require more complexity and password management. Based on b.well’s own experience with Patient Access APIs, 70% of users abandon the login process at the portal credential step for at least one of their data connections, with most drop-offs due to not remembering their credentials or incorrect credentials (Editor’s note: Co-author Jill DeGraff is affiliated with b.well).
The Cures Act also established TEFCA, leveraging an earlier standard for exchanging medical records. The TEFCA FHIR for IAS solution enables smarter searching functionality to locate a patient’s clinical data, ideally creating a standard for all Qualified Health Information Networks (QHIN) to align to, rooted in trust as a collaborative network. Current FHIR for IAS functionality requires that the patient know where their data is, have access to their provider’s portal, and know their provider’s portal login credentials.
A strong start, but more work ahead
TEFCA FHIR for IAS testing is indeed progress and something to be celebrated; however, this is really a first step, and there is more work to be done. Many people in the industry feel that once we activate FHIR, everything is solved. But the reality is that this first round of testing has resulted in several key lessons that are essential to realize the future of seamless patient access and nationwide interoperability, including:
- As it stands today, FHIR for IAS is not yet equipped to drive a comprehensive, equitable strategy given testing outcomes. We must continue to reduce friction and take the burden off the patient if we’re going to get to a scalable solution that really works. Solely relying on a patient to know their portal credentials is not good enough.
- All QHINs need to be responsible and accountable for delivering comprehensive record location functionality that isn’t geographically bound.
- We should not abandon document exchange for patient access—but invest in a “both/and” approach to maximizing access for patients.
The current process for FHIR for IAS should be viewed as the floor, not the ceiling, for ensuring patient access to health data. While FHIR standards provide a critical framework for data exchange, they leave room for interpretation and variability in execution. This has led to inconsistencies in access across QHINs where different networks may set varying thresholds for how and when patients can retrieve their information. These disparities risk undermining the promise of seamless and equitable data access, creating challenges for patients who navigate multiple systems or seek care across state lines. A more unified approach is essential to advance from this baseline and achieve the true potential of FHIR to empower patients with consistent, timely, and comprehensive access to their health records, regardless of the QHIN they interact with.
Building commitment and trust
To fully realize the potential of FHIR for IAS, achieving parity across QHINs is essential. A consistent, robust standard for data access ensures that patients are not disadvantaged based on the QHIN their provider or health system uses and can trust that the network is delivering an equitable experience.
Stronger, more unified standards benefit everyone by reducing fragmentation and simplifying the patient experience. True patient empowerment means meeting individuals where they are—whether they prefer accessing information through a healthcare app, a patient portal, or a third-party platform of their choice.
By enabling seamless access across diverse platforms, QHINs can deliver a unified experience that prioritizes patient convenience, fosters trust and engagement, and drives better health outcomes. This industry-wide effort to harmonize and strengthen IAS implementation, with the support of TEFCA, is necessary to realize a significant step toward making equitable and interoperable data exchange a reality.
