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The emotional trial of clinical trials: like online dating with death risk

jakeseliger.com

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Re: The emotional trial of clinical trials: like online dating with death risk

#81

Post by andyst »

timr wrote: post #50

This was not what I expected to read, and therefore much sadder to me. I had expected to see an article about the emotional strain of not knowing if you're in the control arm or the treatment arm for a late-stage trial. You know that you're in an experiment, and you might get a new drug -- or existing standard of care -- depending on a roll of the dice. This was very different. The author is describing a mad scramble…

Having been through similar processes with family, scouring medical journals and trials for the answer as if its stack overflow, you're in a period of high stress I think I can understand that may have led to the authors perspective and expectations shaping the narrative here.

Re: The emotional trial of clinical trials: like online dating with death risk

#82

Post by timr »

andyst wrote: post #81
timr wrote: post #50

This was not what I expected to read, and therefore much sadder to me. I had expected to see an article about the emotional strain of not knowing if you're in the control arm or the treatment arm for a late-stage trial. You know that you're in an experiment, and you might get a new drug -- or existing standard of care -- depending on a roll of the dice. This was very different. The author is describing a mad scramble…

Having been through similar processes with family, scouring medical journals and trials for the answer as if its stack overflow, you're in a period of high stress I think I can understand that may have led to the authors perspective and expectations shaping the narrative here.

I'm absolutely not criticizing the author. I can understand how you'd latch on to any little signal of hope in this kind of a situation.

Hell, I'd go so far as to say that the oncologists who are saying this stuff probably think they're doing the right thing, and are just trying to give desperate people something to hang on to. It's difficult. But it's still necessary to make it clear what these trials are.

Re: The emotional trial of clinical trials: like online dating with death risk

#83

Post by justsocrateasin »

timr wrote: post #50

This was not what I expected to read, and therefore much sadder to me. I had expected to see an article about the emotional strain of not knowing if you're in the control arm or the treatment arm for a late-stage trial. You know that you're in an experiment, and you might get a new drug -- or existing standard of care -- depending on a roll of the dice. This was very different. The author is describing a mad scramble…

I believe that most of the time patients are enrolled in these trials, they've already exhausted all other options. It isn't quite "life-or-death" but rather "death-or-death-or-maybe-another-chance-at-life"

Re: The emotional trial of clinical trials: like online dating with death risk

#84

Post by j_m_b »

The author is very technologically sophisticated. Imagine how difficult it would be to enroll if this was not the case, just finding trials alone is an arduous task. Streamlining clinical trials, particularly in recruitment and enrollment, is a hard problem.

Re: The emotional trial of clinical trials: like online dating with death risk

#85

Post by timr »

justsocrateasin wrote: post #83
timr wrote: post #50

This was not what I expected to read, and therefore much sadder to me. I had expected to see an article about the emotional strain of not knowing if you're in the control arm or the treatment arm for a late-stage trial. You know that you're in an experiment, and you might get a new drug -- or existing standard of care -- depending on a roll of the dice. This was very different. The author is describing a mad scramble…

I believe that most of the time patients are enrolled in these trials, they've already exhausted all other options. It isn't quite "life-or-death" but rather "death-or-death-or-maybe-another-chance-at-life"

Yes, that's true. There's some question here (the author talks about debating whether to do another round of chemo to shrink the tumors, or to try to get into a trial), but ignoring that, I'm certain that people view it this way.

It doesn't excuse the doctors for not being direct about the choices at play: you are trying to get into an experiment where there's a 50% chance you'll get the same treatment you'd get anyway (one hopes -- it's what is supposed to happen, but some trials have been less-than-ethical), or a 50% chance you'll get a drug that might well be worse than the control.

Particularly for phase 1 trials, that last part needs to be emphasized. You're not doing it to survive. You're doing it because it's the ultimate altruism -- using your own life to find an answer that might help the next patient.

Re: The emotional trial of clinical trials: like online dating with death risk

#86

Post by VS1999 »

readyman wrote: post #44
data_maan wrote: post #29

The issue with the medical system is similar to the issue with prisons: It has no person that is motivated to care about it. If you are an inmate, or a patient you're just happy once you're out, and don't want to spend more of the time to fix. And if you're a free or healthy person, why devote time to something that will likely not concern you? (It might some day, but few people are reflecting enough to realize this.…

> The issue with the medical system is similar to the issue with prisons: It has no person that is motivated to care about it. Why prisoners must be able to vote or you cannot claim to have a democracy

Sounds good to me. We've been trying democracy for a while and I'd like to try something else.

Re: The emotional trial of clinical trials: like online dating with death risk

#87

Post by danielheath »

timr wrote: post #85
justsocrateasin wrote: post #83

Earlier quoted context omitted.

I believe that most of the time patients are enrolled in these trials, they've already exhausted all other options. It isn't quite "life-or-death" but rather "death-or-death-or-maybe-another-chance-at-life"

Yes, that's true. There's some question here (the author talks about debating whether to do another round of chemo to shrink the tumors, or to try to get into a trial), but ignoring that, I'm certain that people view it this way. It doesn't excuse the doctors for not being direct about the choices at play: you are trying to get into an experiment where there's a 50% chance you'll get the same treatment you'd get anyw…

> You're not doing it to survive.

If the currently-available treatments mean I'm going to die, "try something that might kill me or cure me" is absolutely a thing I would consider "to save my life".

Re: The emotional trial of clinical trials: like online dating with death risk

#88

Post by s1artibartfast »

timr wrote: post #50

This was not what I expected to read, and therefore much sadder to me. I had expected to see an article about the emotional strain of not knowing if you're in the control arm or the treatment arm for a late-stage trial. You know that you're in an experiment, and you might get a new drug -- or existing standard of care -- depending on a roll of the dice. This was very different. The author is describing a mad scramble…

None of this data will be published for a phase 1 study, but each participating doctor should have a copy of the investigators brochure, which contains all the preclinical data and clinical data up to this point.

If you are taking a commercial medicine, the first place to check is the "prescribing information", which is publicly available and has all of the trial data, adverse events, efficacy, toxicology, interactions, ect. I highly recommend everyone read for any drug they take. They are usually clear and accessible, and where they are complex, that is a starting point for a informed conversation with your doctor.

It is essentially reading the user manual for the drug you are taking.

Re: The emotional trial of clinical trials: like online dating with death risk

#89

Post by s1artibartfast »

timr wrote: post #85
justsocrateasin wrote: post #83

Earlier quoted context omitted.

I believe that most of the time patients are enrolled in these trials, they've already exhausted all other options. It isn't quite "life-or-death" but rather "death-or-death-or-maybe-another-chance-at-life"

Yes, that's true. There's some question here (the author talks about debating whether to do another round of chemo to shrink the tumors, or to try to get into a trial), but ignoring that, I'm certain that people view it this way. It doesn't excuse the doctors for not being direct about the choices at play: you are trying to get into an experiment where there's a 50% chance you'll get the same treatment you'd get anyw…

I don't think that is the right perspective and it doesn't have to be seen as an act of altruism.

Patients absolutely enroll in ph1 trials because they want to live, and doctors enroll them because they want them to live too.

A lot of time and money goes into picking drugs that companies and doctors think will perform better than the stand of care. That's the whole reason the trial exists. It exists because there is a plausible argument it will be better than the alternative.

Re: The emotional trial of clinical trials: like online dating with death risk

#90

Post by austhrow743 »

timr wrote: post #50

This was not what I expected to read, and therefore much sadder to me. I had expected to see an article about the emotional strain of not knowing if you're in the control arm or the treatment arm for a late-stage trial. You know that you're in an experiment, and you might get a new drug -- or existing standard of care -- depending on a roll of the dice. This was very different. The author is describing a mad scramble…

>If true, this is so, so, so irresponsible. Tell people that you don't know the answer! The control could easily be better than the drug! Don't give them false hope!

I don't think what you want is compatible with early stage trials.

Them not knowing the answer is well established before any conversation takes place. It's the whole point. OP isn't looking at trials that are close to being approved. They're hunting around for anything that might do anything. The super experimental stuff.

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