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Over the past seven years, I’ve had the pleasure of working with hundreds of people, teams, and companies endeavoring to bring innovative and often life-changing solutions to market in healthcare.
Throughout my conversations, one common challenge has consistently come up as particularly difficult to solve: Accessing and retrieving the medical records of individual patients being served. This is a problem for many reasons, but I would distill it down to one key observation. It doesn’t matter how great the software you write is, if it depends on data that you can’t access, your solution is going to be stuck treading water.
Traditional methods of exchanging data in healthcare don’t scale well for digital health applications, in clinical research, or for other non-treatment purposes. The lack of easy access to accurate health data for individuals is THE limiting factor in enabling health technology that makes a difference in the 21st century. Full stop.
The Evolution of Patient-Mediated Data Exchange
Until recently, it was nearly impossible for startups, or even established organizations, to access clinical data on individuals in a timely manner. While Health Information Exchanges (HIEs) have existed in some form or another since the 1990s, they’ve historically been focused on clinical data exchange use cases (i.e., a clinician receiving data on a patient that is directly under their care). For other use cases, such as Personal Health Record apps, Clinical Trial Enrollment, or any direct-to-consumer businesses, organizations were stuck collecting signatures and sending faxes back and forth, or requiring individuals to manually enter their own data.
This began to change in earnest when the 21st Century Cures Act was signed into law at the end of 2016. This law codified the rights of individuals to access and share their personal health information, and indicated that the entities holding this data must make it available for consumption through APIs “without special effort”.
As a result, in the Cures Act Final Rule, ASTP (formerly known as the ONC) mandated that EHR vendors must make these APIs available in their software in order to remain certified. The United States Core Data for Interoperability (USCDI) dataset is now available on a patient-mediated basis. At present, EHRs are required to expose the USCDI v1 Data Set. Effective January 1, 2026, this will advance to the USCDI v3 Data Set.
1up Patient Connect: The Leading Solution for Patient-Mediated Data Exchange
1up Patient Connect leverages these mandated clinical APIs, creating an extensive and growing network through our EHR-validated connector applications to enable access to over 270 million patient records across the country. For many organizations, this is the first time that access to clinical data on the individuals they serve is available at scale. And these people no longer need to spend hours on the phone (or emailing back and forth) with gatekeepers to unlock their data.
Digital health organizations don’t need to invest hundreds of hours into working through arcane approval processes and executing complicated paperwork. Because patients are consenting directly with their providers to unlock and share this data, the data can be used for any use case that the ultimate recipient solicits consent from the patient for. With patients in the driver’s seat, it’s finally possible to access health data at scale across the country.
How do HIEs Differ from Patient-Mediated Data Exchange?
Reading this you might ask “What about HIEs”? Health Information Exchanges, after all, are intended to make it easier to get complete information on patients from across the many locations where they’ve received care. For supported use cases, HIEs are great. However, this requires that data be used for Treatment purposes, so it’s only possible to get access to the data if your organization is providing treatment to the individual in question.
Additionally, receiving the data under a treatment use case and then using it for another purpose – otherwise known as a “secondary use” – is a bit of a gray area at the moment.
A patient-mediated data flow is a happy middle ground which allows access to data across multiple systems, and ensures that the data can be used for any purpose for which the patient has consented.
Could Patient-Mediated Data Exchange be the Right Solution for You?
Last quarter, 1upHealth released the latest update of 1up Patient Connect, featuring enhanced capabilities for simple, secure, and compliant patient data access. 1up Patient Connect is the leading solution for patient-mediated clinical data exchange. This solution can serve a wide range of healthcare organizations – from those providing digital health solutions, to Clinical Research Organizations (CROs) and the vendors that support them, and even payers and provider organizations. Many have already chosen 1up Patient Connect to support their core business use cases involving patient-mediated data access.
I’d relish the opportunity to learn more about your data challenges and to discuss whether 1upHealth may have a solution for you. Please contact us and we’ll schedule a time to discuss your particular business needs.
