Why is it so hard for patients to access their own medical records?
Polly Patient has been managing her Type 2 diabetes for ten years. Aside from her primary physician, Polly visits a handful of specialists including her endocrinologist, cardiologist, and podiatrist. Each of these providers require Polly to log into their patient portal to access her records and treatment plans. Compounding this, Polly recently got a new job that required her to change insurance carriers and relocate to a new state which means she will need to rebuild her medical community.
Polly faces the same frustrating reality millions of Americans experience: trying to gather scattered medical records to share with new doctors. Today, that usually means dozens of phone calls, requests for faxes, and chasing old providers to communicate with new ones. The burden of collection, distribution, and access falls entirely on the patient, often while they’re already managing chronic conditions.
Any patient who has attempted to retrieve medical records understands how frustrating and disheartening it can be. Most people see more than one physician which means they must navigate multiple, complicated patient portals with unique passwords and logins. Consider that, according to the Assistant Secretary for Technology Policy, 59% of individuals reported having multiple online medical portals in 2024, with only 7% actually logging in.
Even when access is granted, the information is often incomplete, as portals typically operate in silos and don’t communicate across systems. This places an unfair burden on patients — many of whom may be dealing with health struggles — to collect and interpret their own health data.
For years, the promise of patient access was tied to digital portals and regional health information exchanges. But these efforts left patients juggling passwords, facing incomplete records, and struggling to piece together their histories. Policymakers and industry leaders have come to a clear conclusion: piecemeal access isn’t enough. Patients need a universal, reliable way to see and share their health information regardless of where they’ve been treated or which system holds their data.
Connecting Patients and Providers to Complete Medical Records
That recognition has led to new national efforts to reshape how data flows. At the center is the CMS-Aligned Network, a policy-driven initiative designed to make patient access real, not theoretical. This network will enable seamless data sharing across providers, labs, insurers, and more.
The CMS-Aligned Network represents a foundational step toward a more connected, patient-centric health data ecosystem. This is why Health Gorilla and other leading health IT companies recently pledged to support the new CMS-Aligned Network, which will enable seamless data sharing between patients and their providers, labs, insurance companies and more.
At heart, this initiative relies on the concept of Individual Access Services (IAS), which refers to the processes, technologies, and services that allow patients to access their own health data and care-related information from one trusted source. For patients like Polly, ideally this means no more juggling portals, chasing faxes, or starting from scratch with every new doctor. Instead, they gain true ownership of their medical history: complete, accurate, and accessible.
IAS empowers patients by granting them access to their electronic medical records, including details about their medical history, diagnoses, treatments, and test results.
But it's not just patients who benefit, although providers have had access to patients’ information for years (if they chose to use it), other stakeholders who need clinical data from the patient also stand to benefit from this digital transformation such as clinical research organizations, worker’s compensation and the SSA’s disability processing. Ultimately by providing this data to the patient they can decide who to share their data with.
In short, IAS transforms disconnected snapshots into a continuous medical history, improving outcomes across every setting of care
Over the next 3–5 years, IAS will transform how healthcare data empowers every stakeholder. For patients, it means true ownership of their health records — accessible anytime, anywhere. For providers, it unlocks meaningful, real‑time insights that inform better, faster care. And for payers, it enables smarter, data‑driven decisions that improve outcomes and lower costs.
What are the IAS Challenges?
IAS sounds like a dream, right? It empowers patients by providing access to their complete medical history while allowing providers, insurance companies and others to easily share EHRs.
But there remain three main challenges:
1. Consent Management
Navigating how individuals grant, track, or revoke consent to access their data across systems remains fragmented. Everyone agrees consent should be simple but in reality, it’s one of the most technically and legally complex issues in healthcare. It can vary from state to state and data type to data type, and there are competing priorities between "simple easy-to-use" and "robust and granular consent controls."
2. Identity Matching
Accurately matching identities to ensure the right data is sent to the right person remains problematic without a national patient identifier or sufficient demographic information. Without accurate identity matching, IAS risks dangerous errors or leaves patients excluded in their own care journey
3. Digital Equity
Not all patients have access to the technology required to enjoy the benefits of IAS. Millions live without smartphones, lack digital literacy or reliable internet connection. IAS, therefore, could create a digital equity problem for vulnerable groups.
The Interoperability Framework
Health Gorilla and other leading health IT companies recently attended a White House event where CMS unveiled a new “Interoperability initiative.” This initiative establishes voluntary standards for data exchange and is designed to support all types of networks—including health information networks, health information exchanges, electronic health record systems, and technology platforms.
The CMS Interoperability Initiative outlines requirements for participating CMS-Aligned Networks to enable patients to access their clinical information, claims, prior authorization details, and explanations of benefits through the third-party applications of their choice. These standards aim to improve secure, consistent access to health data and empower patient engagement.
The Initiative prioritizes access solutions that are centered on patients' needs in addition to provider workflows.
By advancing patient-centered interoperability through the CMS-Aligned Network and Individual Access Services, Health Gorilla is helping to transform fragmented health records into a connected, accessible system—where every patient, no matter where they’ve been or who they’ve seen, can finally gain control of their complete medical history.
