Luck Shouldn’t Be a Factor in Health Care

I am doubly grateful for Robert Cook-Deegan’s “A Brief Note From the Guy on the Table” (Issues, Fall 2025), in which he recounts his experience with the US health care system and his observations of where it shines and where it could benefit from polishing. First, although scientists are trained to discount personal experiences as anecdotes, the reflections of a medically trained and policy savvy scholar like the author provide those of us (and that will be all of us) with a stake in advancing medical care with what is, in truth, invaluable data. Ignore them at our peril. Second, I have spent the last few months wrestling with how to describe my own unanticipated engagement with the medical care system, and Cook-Deegan captures the cognitive dissonance I experienced perfectly.

When you have a serious health scare but come through it successfully, you tend to quickly forget the frustrations and missteps—the difficulties with getting the correct diagnosis from a system that can be quite gappy in its knowledge because of the idiosyncratic nature of how questions get selected in biomedical investigations, a historical reluctance (refusal?) to learn from the experience of patients and families, and a dependence on an algorithmic diagnostic path from symptoms to diagnosis that can get “trapped,” delaying appropriate care. My placing responsibility on the system is deliberate. Everybody working in health care delivery whom I have met wants to do their best for the patient. Unfortunately, the accretion of years of policy and payment decisions that privileged “doing”—reimbursement for time for procedures and diagnostic testing rather than listening, thinking, and searching the available knowledge base—has created a mess of perverse incentives and feedback loops.

One of the unintended consequences is the increasing role of luck in achieving a positive outcome. Cook-Deegan was lucky he was seen at a major academic medical center—a world he understands and where he speaks the native language—creating an opportunity for him to get state-of-the-art care. Also, his brain injury was mechanical, manifested in motor symptoms, and visible to imaging. If he had a mild concussion leading to disruptions in cognition but with no identifiable structural brain damage, there is little known about how best to treat and he could easily have ended up in rehabilitation learning to adapt to cognitive fatigue, attention deficits, and an inability to function at the level he is used to.

A majority of people seeking health care are seen “in the community”—the euphemism used by those in academic medicine for care provided by regional and rural hospitals or clinics. While the care is excellent in many of these institutions, the translational knowledge gaps Cook-Deegan notes can be wider and the transit time slower. I received my care in this environment, and my providers were expert, professional, and compassionate. Still, I often found myself consulting the research literature and picking the brains of my academic medicine friends to align my treatment with the latest knowledge.

So whether in the gleaming academic medical center or the somewhat scruffier regional hospital, we were both lucky to be natives. But how successfully you are treated shouldn’t rely on luck.

Susan M. Fitzpatrick

Robert Cook-Deegan’s harrowing, yet ultimately inspiring, excursion into the maw of the medical-industrial complex amounts to a manifesto for reforming biomedical science and health policy. There are of course many reasons why America’s huge investments in biomedical research and development fail to translate into commensurate improvements in the population’s overall health (a failure that, among many other things, can help to account for attacks on biomedical science by the Trump administration). Cook-Deegan’s tale calls particular attention to a blind spot in the culture of science.

Medical innovation of the sort that helped save my friend and colleague’s life depends on what is learned through medical practice itself—through the daily experiences of the nurses, doctors, surgeons, and technicians who are continually striving to improve the effectiveness of patient care. But the resulting knowledge, created not in the laboratory but in the intensive care unit and operating theater, is valuable for the health care system as a whole only when it is captured and shared with other practitioners, an aspect of medical innovation that, as Cook-Deegan explains, is systemically neglected in our biomedical science enterprise.

He mentions one reason for this neglect: It leads to not just winners but also losers in the biomedical marketplace. Another is a science-policy culture obsessed with the high-profile stuff, like breakthrough discoveries at the molecular-genetic scale and revolutionary patents that lead to blockbuster drugs, yet are dismissive of, if not oblivious to, the importance of other, less status- and income-boosting sources of health care innovation and improvement. Thank goodness for the experts at Georgetown Hospital who knew enough to put superglue into Bob’s brain. But until we invest in capturing, assessing, and disseminating the types of knowledge that enabled those experts to treat his condition so successfully, many other patients in many other hospitals will not be so lucky.

The creation of the Advanced Research Projects Agency for Health (ARPA-H) and the National Institutes for Health’s National Center for Advancing Translational Science amounted to an acknowledgement by policymakers that the hundreds of billions spent on NIH have been much better at advancing science than advancing the nation’s health. But such reforms will not address the literally fatal weakness of a medical enterprise that fails to take seriously the value of knowledge created by the experts who actually innovate at the bedside. The result of this weakness is not only a major disconnect between science and health care, but an entrenched source of inequality in health care delivery.

Daniel Sarewitz