> Historically, the medical profession has had little use for transparency. Grave diagnoses were routinely withheld, on the assumption that they would further patient suffering. The Black men who participated in the infamous syphilis study at Tuskegee, in 1932, were not told that the trial aimed to study untreated syphilis, nor were they made aware of—or offered—penicillin, which became widely available the following decade. Generations of patients with mental illness were often institutionalized with little or no information released to them or their families.
> There are strong ethical reasons, therefore, to pursue transparency in the medical record. But, as Pozen points out, we should not be lulled into treating transparency as a first-order good, like compassion, respect, avoiding harm, or putting the patient first. In a recent survey of more than eight thousand patients conducted by OpenNotes, nearly all the respondents said that they preferred immediate access to their test results, even if their doctors hadn’t yet reviewed those results. This was true even for the vast majority of people who said that they’d experienced increased worry in the face of results that were abnormal. It’s an understandable preference—one that every patient has the right to hold. But simply throwing open the medical record and calling it a day allows us to rest on our laurels without doing the hard work of fixing what’s inside. Police departments often point to body cameras as evidence of accountability without actually addressing the problem of police violence. Lawmakers can laud themselves for their transparency via C-span without having to engage in the gritty compromise needed to move legislation forward. Transparency might better be viewed as one possible means to desirable ends—not an end in and of itself.
An example of this is Cystic Fibrosis research. For decades, CF was the only field with any concrete data on patient outcomes, mostly due to efforts by the Cystic Fibrosis Foundation. This data is fairly conclusive. Specialists aren't all alike. The difference between the best doctors and the below average/average ones is measured in decades.
> It is distressing for doctors to have to acknowledge the bell curve. It belies the promise that we make to patients who become seriously ill: that they can count on the medical system to give them their very best chance at life. It also contradicts the belief nearly all of us have that we are doing our job as well as it can be done. But evidence of the bell curve is starting to trickle out, to doctors and patients alike, and we are only beginning to find out what happens when it does.
The medical field as a whole is poorly designed. For example, it has been known and acknowledged for decades (longer than my lifetime) that the medical residency system doesn't work. It was designed by a doctor who was high on several grams of cocaine at a time and required other people to keep up with his frenzied addiction (and death toll). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7828946/ https://magazine.columbia.edu/article/cocaine-addict-who-cha... We've known for several decades that the current residency system kills people, https://en.wikipedia.org/wiki/Medical_resident_work_hours#Ef... Asking overworked, tired, barely functional students to make life and death decisions on the fly after being awake for 16 hours has been a recipe for disaster for decades. But despite laws, nothing much has changed.
Much of the medical field is like this. We know that checklists reduce mortality and medical errors — https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069616/, but the field refuses to implement them broadly; viewing it as a waste of time, https://qualitysafety.bmj.com/content/21/3/191.short , https://www.researchgate.net/profile/Joseph-Keebler/publicat...
> Zeeni et al. (2014) cited a number of reasons why clinicians may resist the use of checklists, including the perception or fear of the loss of independence associated with read-do checklists that renders them subservient to the checklist and does not leverage their skill and knowledge (Catchpole & Russ, 2015). Other concerns cited by medical professionals regarding checklists include that checklists are often thrust on them by administrative fait accompli, checklists do not consider the unique challenges of their individual circumstances, their use may complicate an already complex task (Catchpole & Russ, 2015), and their use may be seen as a sign of weakness or lack of competency (Gaba, 2013).
> Death by medical error or accident is the nation’s leading cause of accidental death, exceeding all other causes of accidental death combined. Medical error and accidents kill approximately as many people each month in the U.S. as Covid-19 did before vaccines became available.
https://www.nytimes.com/2007/05/17/business/17quality.html
Transparency may be painful and it is definitely not a cure all, but it is self-evidently better than the current status quo. Every time there has been the slightest degree of transparency in the field, it has lifted the veil on just how terrible most doctors are. Even these small efforts in transparency have helped shift the field towards better outcomes for patients through social pressure and patients voting with their feet.