CommonWell Health Alliance recently submitted comments in response to a Request for Information (RFI) from the Centers for Medicare & Medicaid Services (CMS) and the Assistant Secretary for Technology Policy/Office of the National Coordinator for Health IT (ASTP/ONC) focused on the future of health technology. As part of this process, we also attended an in-person meeting to discuss the current state of the health technology ecosystem. What really stood out to us? This time, there were patients in the room.
They stepped up to the mic and shared their stories, the real, often frustrating experience of trying (and failing) to access their own records. It was powerful and honestly a bit disheartening.
If you think back to 2022, there was reason to celebrate: New federal rules required healthcare organizations to give patients full, digital access to their health records. No more fax machines. No more waiting weeks for paperwork. No more calling multiple offices and running around town trying to collect pieces of your own health history. However, after all the fanfare about digital access, it turns out that not much has changed for the average person — something that, as advocates for patient access, we hear all the time.
For anyone who’s ever tried to track down their medical records, whether for an appointment with a specialist, a life insurance application, or just plain curiosity, it can be a challenging process. And despite additional national policy support and verbal commitments from healthcare providers, here we are years later, and it’s still incredibly difficult for patients to get their own information.
Why is this process still so difficult?
As a sector, healthcare has made big investments in technology and infrastructure to allow health records to be shared digitally. But when it comes time to actually use those systems, the barriers derail any successes.
One major hurdle is patient portals. In theory, portals provide patients access to their records. In practice, they’re a mess. Many people don’t even know if they have a portal, can’t remember their login credentials, or are juggling multiple logins for different providers. Oftentimes the name on the door of their provider’s clinic does not match the name that we see in nationwide directories. Research conducted by b.well shows that 70% of users abandon the process when asked to enter portal credentials.
Even for patients who are able to access a portal successfully, the data is likely incomplete. Portals don’t talk to each other, meaning, your primary care doctor might use one system while your specialist uses another. So even though the infrastructure technically exists, the burden falls on patients, many of them sick or managing chronic conditions, to piece it all together. This can feel impossible on top of managing an illness.
Scattered data is also a major issue. People move, switch insurance providers, or change doctors. While these are common occurrences that happen frequently in life, they can unfortunately lead to a fragmented, inaccessible medical history. That older data might still be crucial, especially for someone managing a long-term condition, applying for disability, navigating a veterans’ benefits claim, or even trying to understand the progression of their own diagnosis.
For many patients, being able to get their health records quickly and easily can have real consequences. For example, life insurance or disability applications can stall because key documents are delayed or missing. Parents trying to coordinate care across multiple providers for a child with complex needs are forced to become de facto data managers. If we take patient-centered access seriously, then systems need to be built for patients, not just around them
What should seamless access look like?
There are tangible solutions to making this process better, each of which are vital to meaningfully improve patient access:
- Design for usability, not just compliance. Interoperability shouldn’t only mean that systems can exchange data — it should mean people can understand and use it.
- Define a national standard for patient matching so that provider organizations releasing data to patients don’t feel the need to rely on portal credentials as the only way of validating the patient’s identity resolution.
- Make access as easy for patients as it is for providers. Ensure systems work together seamlessly so a complete medical history isn’t spread across a dozen portals.
- Create national consistency in how records are requested and shared — not just for treatment, but for insurance, disability claims, or personal understanding.
You shouldn’t need an advanced degree or copious amounts of free time to be an active participant in your own healthcare journey.
The value of listening to and centering patients
Too often, healthcare meetings are filled with “inside baseball” language. Policy makers, technologists, and administrators talk in acronyms and abstraction and at a level that is sometimes disconnected from the real-life experiences of patients. Even those of us who speak healthcare sometimes stumble on an acronym or two.
What made the recent RFI meeting different was the presence of actual patients. They weren’t just invited, they were part of the conversation. And they didn’t hold back.
They shared stories about trying to gather records from multiple providers. About systems that promised access but failed in practice. About the emotional and logistical toll of constantly having to advocate for information that should already be theirs.
These stories weren’t just compelling, they were eye-opening. They showed us exactly where the gaps still exist, and they reminded everyone in the room why this work matters.
What’s next?
The infrastructure is (mostly) in place. What’s missing is usability, accountability, and follow-through, and the policies could be much stronger. All of these things and more were reflected in our own response to the RFI. While the thing we do best is ensure that data can be exchanged, we’re never taking our eye off of what success will look like for all stakeholders.
The good news? While a recent blog post from the ASTP delineating their 2025 priorities did not specifically mention patient access, we’re optimistic about the momentum built from the in-person meeting in D.C. and that they will be centered in future priorities. Patients are being heard. Conversations are shifting. But we have to keep going and keep listening.
Because no matter how sophisticated our systems become, if they don’t work for the people they’re supposed to serve, then they’re not really working at all.
Read our full RFI response here.