4 ms·
This article compares medical experimentation with varying levels of egregiousness, but leaves unmentioned the variable interpretation of the standard of care u
by medymed 11y ago
This article compares medical experimentation with varying levels of egregiousness, but leaves unmentioned the variable interpretation of the standard of care used for control groups. Is the standard of care the regimen that was outlined in the most-cited international guidelines published 6 years ago, or is it the guideline supplemented by off-label drugs that have gained widespread usage for their published increase in treatment efficacy but have not made it into the guidelines yet, because the meeting to rewrite them is next year? Things change fast in cancer and infectious disease and other fields, so this becomes important when designing trials.
Anecdotally, it is also interesting to enroll patients in research/trials. The idea of a fully-informed patient is incomplete in that patients are not doctors specialising in their disease, so they will always be much less informed about risks. Even if a patient hears a risk of a treatment is , for example, aplastic anemia and is 'informed', it would take a few hours to explain the possible consequences of that one side effect, much less the others. Consequently, a lot of consenting to research or treatment protocols involve an immense amount of trust. One patient was skeptical of a research protocol until it was explained very carefully, after which I chatted with the family for 1-2 hours waiting for the next blood draw and let them know that I had put on my bow tie just to see them (which was true). Other patients just don't even give hearing about it a shot, which is disheartening sometimes.
- tel 11y agoInforming patients is a hugely variable thing. It's "fast moving" at the moment to make it more digitized at least, but that isn't always clearly the best solution for patients even if it may be an improvement over the rushed PI interview and boring training video. I think what's exciting about clinical research—if only in principal!—is that a doctor has an excuse to spend more time involved in a patient's life and health. The idea of having an interview with the whole family discussing a patient's health is pretty interesting even if it comes attached with the additional burden of understanding an (often complex) trial protocol. Unfortunately, I think that the idea of being able to schedule enough time for such an interview (and doing so while wearing your best bow tie) is a rare one.