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It's definitely not optimized for someone trying to find the most promising trial, and IMHO it shouldn't be; if people are self-selecting into trials (and into

It's definitely not optimized for someone trying to find the most promising trial, and IMHO it shouldn't be; if people are self-selecting into trials (and into different trials), then that adds confounders that can potentially make the whole trial useless at its core purpose, which is to establish the efficacy of a particular treatment, not to treat the patients - I mean, usually roughly half of the trial participants won't even get the treatment.

BHSPitMonkey 3y ago
Fixing this problem doesn't imply patients getting to insert themselves into trials unilaterally. And surely the principal investigators of many of these "treatment for a rare condition" studies would similarly benefit from efficient matchmaking with compatible participants (obviously still at their discretion and subject to however the experiment is designed).
happytiger 3y ago
Medical ethics isn’t black and white like this though. Nor is the only purpose of trials to find treatments or cures. They have medical ethics review because they need to balance the risks and studies have controls by nature so you can get in to a study and not receive treatment. There are four pillars of medical ethics: - Beneficence (doing good) - Non-maleficence (to do no harm) - Autonomy (giving the patient the freedom to choose freely, where they are able) - Justice (ensuring fairness) All of those factors need to be balanced. If we’re honest this is optimized to kill people, especially poorer people or people without strong advocates. It’s murder by the state when the state prevents you from receiving care that would otherwise be available to you, but for the law. What conceivable purpose could a blanket ban on telehealth in the same country serve but protectionism. States can’t even opt in to allowing it — that is an ethics failure and desperately needs fixing.
- jdietrich 3y ago
  The vast majority of clinical trials fail - the majority of participating patients have to go through a barrage of inconvenient, risky and often painful procedures for no benefit whatsoever, or to their active detriment. The fact that seriously ill people seek out trials in the belief that it'll prolong their life is in itself an ethical failure. The reason we do clinical trials is so that we know which treatments actually work, to spare patients the cost and suffering of being subjected to a vast array of speculative treatments based purely on a hunch. Travelling across the country to be a guinea pig is not, for most people, how they would choose to spend their last days on earth. I applaud anyone who chooses to participate in a trial because they want to contribute to advancing the frontiers of clinical knowledge, but I pity anyone who participates in a trial because they've got their hopes up about some shiny new treatment that is overwhelmingly likely to be a total waste of time. In my country, it's fairly common to see fundraisers for terminally ill young people to send them to America "for pioneering (i.e. completely unproven) treatment". My heart sinks every time I see it, because I know that the vast majority of those young people will end up dying just as quickly as they would have done without the trial, but with many of the last days of their life squandered in the pursuit of vanishingly thin odds.

BHSPitMonkey 3y ago

Fixing this problem doesn't imply patients getting to insert themselves into trials unilaterally. And surely the principal investigators of many of these "treatment for a rare condition" studies would similarly benefit from efficient matchmaking with compatible participants (obviously still at their discretion and subject to however the experiment is designed).

happytiger 3y ago

Medical ethics isn’t black and white like this though. Nor is the only purpose of trials to find treatments or cures. They have medical ethics review because they need to balance the risks and studies have controls by nature so you can get in to a study and not receive treatment. There are four pillars of medical ethics: - Beneficence (doing good) - Non-maleficence (to do no harm) - Autonomy (giving the patient the freedom to choose freely, where they are able) - Justice (ensuring fairness) All of those factors need to be balanced. If we’re honest this is optimized to kill people, especially poorer people or people without strong advocates. It’s murder by the state when the state prevents you from receiving care that would otherwise be available to you, but for the law. What conceivable purpose could a blanket ban on telehealth in the same country serve but protectionism. States can’t even opt in to allowing it — that is an ethics failure and desperately needs fixing.

jdietrich 3y ago
The vast majority of clinical trials fail - the majority of participating patients have to go through a barrage of inconvenient, risky and often painful procedures for no benefit whatsoever, or to their active detriment. The fact that seriously ill people seek out trials in the belief that it'll prolong their life is in itself an ethical failure. The reason we do clinical trials is so that we know which treatments actually work, to spare patients the cost and suffering of being subjected to a vast array of speculative treatments based purely on a hunch. Travelling across the country to be a guinea pig is not, for most people, how they would choose to spend their last days on earth. I applaud anyone who chooses to participate in a trial because they want to contribute to advancing the frontiers of clinical knowledge, but I pity anyone who participates in a trial because they've got their hopes up about some shiny new treatment that is overwhelmingly likely to be a total waste of time. In my country, it's fairly common to see fundraisers for terminally ill young people to send them to America "for pioneering (i.e. completely unproven) treatment". My heart sinks every time I see it, because I know that the vast majority of those young people will end up dying just as quickly as they would have done without the trial, but with many of the last days of their life squandered in the pursuit of vanishingly thin odds.