By STEPHEN FARBER
If you grew up in the 1980s, you probably remember Press Your Luck. Contestants stood in front of a flashing game board chanting, “Big bucks… no Whammies… STOP!” hoping the next square held cash instead of the mischievous cartoon character that erased everything they had won.
For years, assembling your own medical history felt remarkably similar.
You knew you had been treated at one hospital years ago, had imaging performed somewhere else, saw specialists who later retired, and changed insurance more than once along the way. One patient portal showed part of the story. Another required a password you hadn’t used in years. A medical records department offered to mail you a PDF after you completed a release form. Somewhere there was still a CD that no computer in your house could read. None of this meant your information had disappeared. It simply meant that putting it together depended almost as much on persistence as process.
That has always been one of healthcare’s great ironies. The industry became exceptionally good at documenting encounters. Every office visit, laboratory result, prescription, imaging study, discharge summary, and insurance claim was carefully preserved somewhere. What it never became particularly good at was helping individuals assemble those encounters into a coherent picture of their health over time.
For years, most of us accepted that as an unavoidable consequence of a fragmented healthcare system. In reality, it reflected a combination of technical limitations, business incentives, and regulatory uncertainty that made sharing information far more difficult than creating it. Patients often became the courier between organizations because there were few practical alternatives.
Quietly, that has begun to change.
While much of the industry’s attention has shifted toward artificial intelligence, another transformation has been taking place beneath the surface. The 21st Century Cures Act, Information Blocking regulations, standardized FHIR APIs, CMS interoperability requirements, and the continued evolution of TEFCA have collectively changed the trajectory of patient access. None of those developments solved the problem on their own, but together they have created an environment in which individuals can retrieve far more of their own health information electronically than was practical only a few years ago.
Although we’re still in the early stages, the technology has matured to the point where individuals can increasingly assemble and steward their own longitudinal health record. That changes the conversation. For much of the past decade, patient access was largely a policy discussion centered on whether people should have meaningful electronic access to their own information. Increasingly, the more interesting question is what becomes possible once they do.
As the market has evolved, complementary approaches have emerged. Some companies focus on helping individuals retrieve records directly from the organizations that hold them. Fasten Health is an interesting example because it begins with a simple premise: individuals should be able to assemble a record they control. Other organizations focus on discovering where records exist through exchange networks, while infrastructure companies simplify connectivity so developers can build applications without creating thousands of individual integrations. These approaches solve different problems, but they increasingly reinforce one another instead of competing.
That convergence has quietly moved the industry across an important threshold. For years, success was measured by our ability to collect fragmented data. Standards had to mature, regulations had to evolve, organizations had to expose information electronically, and software developers had to build practical ways of retrieving it. Much of that work occurred outside public view, but together it has made something increasingly realistic that once felt aspirational.
Bringing information together is a significant achievement because it gives people, often for the first time, a more complete picture of their interactions with the healthcare system over many years. A longitudinal health record tells us where someone received care, what diagnoses were made, which medications were prescribed, and what procedures were performed. Those are essential building blocks, but they rarely explain why decisions were made, what alternatives were considered, who participated in those conversations, or what mattered most to the individual at that point in life. Records preserve information extraordinarily well. Context has always been more difficult to preserve.
Healthcare has good reasons for operating around encounters because that is how care is delivered, documented, and reimbursed. People, however, experience their lives as a continuous story in which one decision influences the next, often over decades.
The opportunity created by patient access is therefore not simply the ability to retrieve more information. It is the ability to connect that information with the context that gives it meaning.
Developing that context does not replace the medical record. Clinical documentation remains the authoritative record of care, and it should. The opportunity is to allow individuals to connect those clinical records with information that has historically lived only in conversations, family members, notebooks, and memory. Healthcare has never lacked information. It has often lacked continuity.
That continuity becomes increasingly important as people live longer with multiple chronic conditions, receive care from more organizations, and depend on spouses, adult children, friends, and neighbors to help navigate the system. Each transition creates another opportunity for context to be lost. Each new physician inherits another chapter without necessarily understanding the chapters that came before it. A longitudinal health record makes those chapters easier to assemble. A longitudinal health story makes them easier to understand.
The first chapter of interoperability was making health information accessible. The next chapter is helping individuals assemble, enrich, and share a longitudinal health story. Patient access was never the finish line. It was the foundation.
Stephen Farber is Co-Founder and CEO of HealthHive and on the Board of Directors of the American Society on Aging.
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