The Last Mile of Health Data Access

The Sequoia Project launched the Consumer Engagement Strategy Workgroup with a singular mission: reduce patient administrative burden by making it easier for people to access and use their own health data. If your initial reaction when you read this mission statement is, “Haven’t we done that already?,” you’re not alone.

The thing is, we haven’t. We’ve come a long way in the past 15 years, but the process is still unnecessarily confusing, cumbersome and complex. Portals emerged as the industry’s way of facilitating patient access, but portals don’t include everything and are not all the same. Specialty data and imaging data often are stored outside of the EHR and not available through the portal, and getting access to that data often requires printing, signing, faxing or scanning documents and viewing data stored on disc drives. Maybe these processes made sense when they were adopted, but today’s patient often doesn’t have access to the dated technology required to do these seemingly simple administrative tasks. Fewer people have home printers. Most modern computers don’t have disc drives, and nobody outside of the health system has had or used a fax machine in years. Yet, these processes and requirements persist. Often, patients must pay to access certain types of data, and payment methods for records fees are less consumer friendly than they are for appointment co-pays, in some cases requiring patients to write and mail in paper checks before medical records departments will release the records. Have you written a check lately? Do you know where to find your checkbook? Do you even have one anymore?

For the patient facing a health crisis who is stressed, pressed for time and may feel overwhelmed, navigating the process of accessing data can feel like a cruel obstacle course of processes, procedures, searching and forms. To someone frightened by a new or worsening diagnosis, the antiquated nature of the processes relative to experiences with using other apps and tools can magnify the frustration.

The difficulty is not deliberate, but the burden of the barriers is real and the impact is cumulative. At the time these processes were developed, they made perfect sense to those who were developing them. Maybe then they were the best that technology could enable. But that was then. Other industries have moved on, shaping technology to anticipate and meet the needs of consumers, eliminating points of friction and making user “agency” and satisfaction a key priority. Consumer-centric experience design has not been embraced when it comes to health data information and access, and the consequences fall on patients, caregivers and the staff at health systems fielding urgent calls for assistance.

The Sequoia Project’s Consumer Engagement Strategy Workgroup set out to understand the problems and identify a way forward. We conducted meetings with expert speakers and performed audits of health systems across the country to assess how health data issues and information were presented to the patient. Through our exploration and research, several things became clear:

• Health data access is a well-established right – Patients have a federally guaranteed right to access their data in a timely manner. A few tweaks might make it easier, but we have won those battles. Our right to our data is clear.

• The infrastructure is in place – Billions of dollars in taxpayer-funded investments in health IT systems over the past 15 years, combined with ongoing incentives for standards, have created the needed infrastructure and backbone to ensure that patients’ data is accessible. In addition, technology developed for other sectors have built a large set of options for updating the more analog approaches to data access that are often now required.

We’ve already done the heavy lifting. We’re through the hard part, so why is it still so difficult for patients to get their data? What’s missing is the right perspective. Health data information and access is designed to meet the needs of the health system and provider. Privacy policies in place? Check. Regulatory requirements met? Check. Legal obligations? Done. But the box that nobody checked was – does this make sense to the patient?

Over the past year, The Sequoia Project’s Consumer Engagement Strategy Workgroup set out to define a better way of approaching and presenting health data information to patients, refocusing how data is presented around simple user experience design principles. Begin with the user in mind. Imagine you’re a patient with a health crisis who is suddenly faced with an urgent need to access your data, then working from there to draft a set of best practices for how to present data in a more intuitive, patient-centric way. We accompanied those best practices with a “toolkit” aimed at helping health systems, vendors and providers adopt these best practices, adjusting them to meet the needs of their unique patient populations.

The first draft of our report was released in early 2026. We received a lot of input, praise and some very helpful suggestions, which we have now incorporated into a final version. Our final document is now available.

Our hope is that health systems, providers and the vendors that support them will use these best practices as a guide for how they can improve the experience of patients who need to access their health data. The accompanying toolkit provides clear, step-by-step descriptions of what is needed, why and how to get started. If you and your team are ready to take this on, please reach out to us at InteropMatters@sequoiaproject.org. The workgroup is continuing to create tools to help Sequoia members and industry partners succeed in making this work. We’ve come so very far in making all data accessible to patients. We think these best practices can help you and your team bridge the “last mile” toward seamless patient data access.