Rising digital habits, evolving tech infrastructure, and patient expectations are slowly paving the way for more portable, consumer-controlled health data exchange.
A new chapter in health data access is taking shape. While still in early stages, consumer-directed health data exchange platforms are beginning to shift the traditional dynamics of health information access, moving beyond the limitations of individual provider portals toward a future where health data moves with the patient. As this model evolves, organizations that adopt consumer-directed data exchange early can design new workflows and deepen engagement in a more connected, patient-centered healthcare landscape.
The evolution of health data access
For years, patients wanting to access their medical records faced a fragmented experience: logging into multiple provider portals, requesting paper records, or repeating their medical history at each new care encounter. That’s starting to change.
The federal Trusted Exchange Framework and Common Agreement (TEFCA), particularly through its Individual Access Services (IAS) provision, now enables patients to access, retrieve, and use their medical information and share it with whomever they choose. More than 9,200 organizations are participating in the TEFCA exchange, representing over 60,000 clinical connection points.
Rather than simply viewing records, patients can now potentially consolidate information from multiple providers and direct it to digital health apps or other trusted services of their choosing. The model draws comparisons to consumer financial technology: just as Apple Wallet simplified how people manage payments and identification, these platforms aim to give patients similar control over their health data.
Consumers are already managing health digitally
Consumer readiness for this shift is substantial. According to a recent KFF survey, three in four U.S. adults (75%) used a healthcare app or website in the past year. Most accessed medical records or lab results (71%), made appointments online (61%), or managed medications (59%). More than half messaged their clinicians digitally, and even video visits were used by 35% of adults.
How U.S. adults use health care apps or websites
Fig 1. Percent who say they have used a health care app or website either on their smartphone, tablet, or computer to do each of the following, asked of those who have ever used health care apps, reported among total U.S. adults. Source: KFF Health Tracking Poll (September 23-29, 2025).
What’s particularly notable is how widespread this behavior is across demographics: while digital engagement increases with income (from 58% among households earning under $40,000 to nearly 90% among those making $90,000 or more), age gaps are surprisingly narrow, with strong usage among both younger adults (67% of 18-29-year-olds) and seniors (77% of adults 65+).
Three in four U.S. adults now use health apps or websites
Fig 2. Most adults across demographics say they have used a health care app or website to manage their health care. Source: KFF Health Tracking Poll (September 23-29, 2025).
Real-world data exchange implementations
Several platforms are bringing consumer data exchange to life. HealthEx, working with partners including athenahealth, CLEAR, Epic Systems, and various health information networks, has launched what it describes as patient-directed health data exchange services. Patients using the company’s individual access service can immediately connect to organizations that are live on TEFCA, and since most of Epic’s providers have already onboarded to TEFCA, they can immediately exchange data. The platform uses secure identity verification and captures patient consent before retrieving clinical records.
The mechanics are relatively straightforward: a patient verifies their identity, grants consent to access their records from participating providers, and receives a consolidated file of their medical information. The service is composed of a computable consent infrastructure and an artificial intelligence-driven data policy engine, with all patient choices enforced under its IAS designation, so they remain secure, auditable, and revocable.
Other companies like xCures have also launched IAS capabilities, and major electronic health record vendors are building the infrastructure to support these exchanges. However, it’s important to note these services currently reach only providers participating in TEFCA and similar frameworks. Coverage is expanding but remains incomplete.
Why it matters for healthcare leaders
Health systems and providers
For providers and health systems, this shift introduces both opportunities and obligations. TEFCA aims to bridge gaps by binding all participating health information networks and their members to common rules to guide the exchange of health information across networks. This standardization could reduce administrative burden over time, but it requires investment in systems integration and workflows to respond to patient data requests efficiently. As patients increasingly aggregate their records from different providers, organizations will need to respond to greater transparency and patient-driven decision-making.
Payors and PBMs
Payors and PBMs face a more complex landscape. Patient-controlled data flows could enable more sophisticated health apps that help consumers navigate coverage options and identify cost-effective care pathways. However, this same transparency may put pressure on payors to compete on actual value rather than information asymmetry. Some payors are actively participating in these ecosystems, recognizing that supporting data portability may strengthen member relationships.
Digital health companies
Digital health companies stand to benefit most immediately. With patient permission, they can now access comprehensive medical records to power clinical decision support, care coordination tools, or personalized health coaching. EHR providers like Epic are building secure, compliant connections with mobile health services like Apple Health and Fitbit. This integration of clinical data with consumer-generated health information opens new possibilities for population health management and personalized medicine.
Patients and consumers
For patients and health consumers, the promise is intuitive: your health data should travel with you. Practical use cases include coordinating medications across multiple providers, sharing complete medical histories with specialists, or enabling AI tools to identify potential drug interactions. Yet adoption remains uncertain. Patients must actively choose to use these services, understand consent processes, and decide which third parties to trust with their sensitive health information.
Friction points that could slow adoption
Several factors will determine whether consumer-directed health data exchange becomes mainstream or remains a niche capability.
Technical maturity is still evolving
While the underlying standards (FHIR, TEFCA protocols) exist, not all provider systems can respond to IAS requests with complete, standardized data. While EHR vendors and QHINs under TEFCA have committed to supporting IAS, few have done so thus far. Data quality, completeness, and semantic interoperability remain ongoing challenges.
Privacy and security concerns are substantial
Many digital health products are low-risk Class I devices that don’t need FDA approval, and many consumer-facing health apps and wearable devices are not covered by HIPAA. When patients share data with non-HIPAA covered entities, that information may be used for purposes beyond direct healthcare, including marketing or analytics.
These concerns are well-founded: KFF survey data shows most U.S. adults express significant privacy worries about health-related apps, with 78% concerned about government-managed apps, 75% about private technology companies, and 52% about hospital or healthcare provider-managed apps. Patients need clear, comprehensible information about how their data will be used and protected.
Most U.S. adults would be concerned about privacy on health care-related apps, no matter the manager
Fig 3. Percent who said they would be very or somewhat concerned about the privacy of their information when using a health care-related app managed by each of the entities. Source: KFF Health Tracking Poll (September 23-29, 2025).
Business model sustainability is unproven
Most current implementations are in early-adopter or pilot phases. The economics of operating these platforms—who pays, how much, and for what—haven’t yet been established at scale. Whether these services become broadly accessible or remain premium offerings will depend on finding sustainable revenue models.
Consumer awareness and trust may prove decisive
Many patients don’t yet know these capabilities exist, and those who do may be appropriately cautious about sharing medical information digitally. The privacy concerns reflected in the KFF survey—with roughly three-quarters of adults worried about government or tech company management of their health apps—underscore the trust deficit that must be overcome. Building trust requires not just secure technology but transparent governance, clear communication about data use, and demonstrated value in terms of better health outcomes or more convenient care.
A promising start to a long transition
The Centers for Medicare & Medicaid Services is taking steps to modernize the nation’s digital health ecosystem, with a focus on empowering Medicare beneficiaries through greater access to health technologies. Industry leaders have signed voluntary pledges to support data exchange standards, and new regulations are clarifying expectations for information blocking and interoperability.
Yet it’s premature to declare a transformation. We’re witnessing the early stages of what could become a big shift in how health information flows, but meaningful adoption will take years, not months. Success depends on solving technical challenges, addressing privacy concerns, demonstrating clear value to patients, and aligning incentives across a complex ecosystem of providers, payors, technology companies, and regulators.
Leading the future of health data exchange
For healthcare organizations, the strategic question isn’t whether these developments matter—the trajectory toward patient-directed data exchange appears clear, even if the timeline remains uncertain. Rather, the question is how to position for a future where patients have more control over their health information, and what that means for business models, competitive positioning, and care delivery approaches.
Consumer-directed health data exchange represents an emerging trend worth monitoring closely. Its evolution will reveal much about healthcare’s broader consumerization; not just whether patients want more control over their data, but whether the industry can build systems that make that control meaningful, secure, and genuinely useful.
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