When Research Remembers Protocols but Forgets People, Everyone Loses.
Building Systems that Remember People is the Next Frontier.
At My28days, we hear again and again from people who feel fragmented by systems that were never designed to hold a whole life over time. Research advances, care improves, and yet the person often disappears between protocols, appointments, and studies. This reflection explores why that happens—and what may be missing at the structural level.
For decades, the National Institutes of Health has been one of the world’s most potent engines of biomedical discovery. Its scientists, institutes, and studies have transformed how we understand disease. And yet, for many people living with lifelong or complex conditions, the experience of research still feels fragmented, episodic, and strangely impersonal.
There is a reason for this—and it has less to do with intention than with architecture.
The NIH does not have a person-centered spine.
What it has instead is a protocol-centered system. Studies are continuous. Grants are continuous. Laboratories are continuous. People are not.
Most individuals encounter research in pieces: a clinical trial here, a registry there, a survey at one point in life, another year later. Each experience may be well designed and ethically conducted, yet the person rarely remains whole across them. Consent is tied to a single study. Data is siloed by project. Identity is reduced to variables. Over time, the story of the person is lost, even as data accumulates.
This is not a moral failing. It is a structural one.
Modern medicine increasingly acknowledges that many health conditions unfold across decades, not months. Understanding them requires longitudinal continuity—across care settings, life stages, and changing priorities. But NIH infrastructure still treats continuity as a property of protocols rather than people. Research systems are excellent at producing knowledge within bounded studies, yet poorly equipped to remember the person across time.
This absence becomes especially visible for individuals navigating conditions that don’t fit neatly into acute or episodic models of care. For them, research participation is not a one-time event; it is part of a long, evolving relationship with the health system. Without a person-centered backbone, that relationship is repeatedly interrupted, reset, or erased.
The solution is not simply more registries, larger databases, or better analytics. Nor is it a rejection of the NIH’s extraordinary scientific strengths. What is missing is a systems-level architecture that treats the person—not the protocol—as the unit of continuity.
A person-centered spine would allow individuals to carry a longitudinal record across care and research contexts. It would coordinate consent, stewardship, and data flow without centralizing control or extracting ownership. It would support local care and community while enabling ethical, federated research at scale. Most importantly, it would allow people to remain recognizable to the system over time.
Other fields have already solved analogous problems. Aviation, computing, and other high-reliability systems depend on backbones that coordinate distributed parts without collapsing them into a single point of failure. Biomedical research is a science. What it lacks is the spine.
Until this structural gap is addressed, even the most sophisticated studies will continue to accumulate without coherence. Precision medicine will remain more promise than practice. And the people whose lives make research possible will continue to move through systems that were never designed to remember them.
Building a person-centered spine is not a critique of the NIH’s past. It is an invitation to its future. At My28days, people are more than data points and more than moments in time. Any system meant to serve health, research, or care must be able to remember the person across seasons of life. Until that becomes true, even the best intentions will fall short.
Take care and be well,
Dr. Lawrence M. Nelson, MD, MBA
Director, My 28 Days® Initiative
President, Mary Elizabeth Conover Foundation, Inc.
Lawrence M. Nelson, MD, MBA, is a physician–scientist and former NIH investigator whose work focuses on person-centered health systems, longitudinal research architecture, and readiness-based care. He writes at the intersection of medicine, systems design, and lived experience, with a commitment to service, truth, and heritage.
