In medical practice today, 99.99% of the experience that physicians gain in treating disease is flushed down the toilet. The government should adopt policies to capture that experience and make it available to all.
Experience is the bedrock of medical practice. In any given situation, doctors are most confident in their decisions if several other doctors have previously faced the same situation, and have carefully tabulated what they tried and how the patient fared.
Now that many physician practices have moved to electronic medical records – a mixed blessing, to be sure – the next and most important step is enabling clinical queries of the national experience in treating specific subsets of patients.
This would help someone like my friend Jeff, who must wear oxygen just to walk, because his heart is beating irregularly and too fast (“atrial fibrillation”). Jeff is 80, has significant lung disease from past smoking, has a stiff heart muscle, lives at an elevation of 6000 feet, and has psoriasis. All of those characteristics could be driving his disease in one way or another, but no medical textbook or clinical study in the world tells doctors how a man with all those characteristics is best treated for atrial fibrillation – because the situation is too detailed. Medical science has never been able to assemble and study a group of 100 men (or even 5) with atrial fibrillation who are 80-ish, have lung disease, have a stiff heart, live at 6000 feet, and have psoriasis.
A national query-system would allow Jeff’s doctors to instantly review the course of men just like Jeff, and understand which of the many possible treatments for atrial fibrillation has the best chance of success. Lacking such a system, Jeff’s doctors are trying one treatment after another, hunting for one that works for him – a slow process.
Full patient records are the key to this system, especially the evolution of a patient’s illness over time (a feature often lacking in patient “registries” compiled today).
Records would, of course, be anonymized before abstraction into the national system. For those who believe it still exists in the digital realm, privacy is a concern because it is sometimes possible to identify specific individuals inside a small collection of anonymized medical records. In those situations, access could be limited to physicians.
Participation by patients should be voluntary, but opt-out. Compassion for the sick would make opt-outs uncommon. Government oversight is best because no one wants their medical record “monetized,” as a corporate overlord would inevitably be driven to do… A national query-system would be of the people, by the people, and for the people.
This system would complement, not replace, today’s gold-standard source of clinical information, the randomized trial. Unfortunately, randomized trials can answer only simple questions, and are often blind to subsets of patients who react in exceptional ways. Medical practice contains few simple questions, and identifying exceptions to general rules is a central physician function.
In short, a national query system would make every doctor smarter about his or her patient’s specific illness – and it is hard to argue against having smarter doctors.