3 ms·

The tautological limitations of our medical system frustrate me. Things aren't attempted because they lack clinical evidence, and they lack clinical evidence be

The tautological limitations of our medical system frustrate me. Things aren't attempted because they lack clinical evidence, and they lack clinical evidence because they are not attempted. I know that sounds like I don't understand that this is simply how medical science works; in fact, I do. It's the cost of improving our certainty as new therapies are adopted. But, it's frustrating.

justinjlynn 8y ago
Frustrating, yes, but ethical. Unproven treatments aren't tried in day to day clinical settings - they are tried in trials or, maybe, with extreme reluctance and caution - and the supervision of an ethical board and, maybe, with the supervision of the local governmental medical authority.
- cjbprime 8y ago
  You're a little quick to call things ethical -- in this article's case, the patient's doctors established that she had a fungal infection that was resistant to the treatments they had tried, then told her she would die soon and to prepare for it. What would be unethical about instead offering an experimental antifungal treatment that had not been clinically tested or verified? When you have a fast-acting terminal disease and are capable of participating in informed consent, seriously, what's the worst that can happen?
dekhn 8y ago
It's more complicated than that, but yes, the current state of medical research on humans is really far worse than it could be. Note than many of the barriers are political. For example, we want to use clinical date from the EU, but the GDPR law makes working with the data extremely challenging. Previously, I worked with GA4GH which is trying to get consent forms changed to allow more aggregation of clinical data to be re-used outside of the original trial (metastudies on millions of patients) but it hasn't really gained a lot of adoption. Other barriers are financial- there are a lot of incumbents who make a lot of money without making the system significantly better (I think of the major EHR companies here, especially Epic, but many drug makers and medical device makers fall in this category too). Even within the reasonable constraints on ethics, the field could do tremendously better but there is no political will to make it so.

justinjlynn 8y ago

Frustrating, yes, but ethical. Unproven treatments aren't tried in day to day clinical settings - they are tried in trials or, maybe, with extreme reluctance and caution - and the supervision of an ethical board and, maybe, with the supervision of the local governmental medical authority.

cjbprime 8y ago
You're a little quick to call things ethical -- in this article's case, the patient's doctors established that she had a fungal infection that was resistant to the treatments they had tried, then told her she would die soon and to prepare for it. What would be unethical about instead offering an experimental antifungal treatment that had not been clinically tested or verified? When you have a fast-acting terminal disease and are capable of participating in informed consent, seriously, what's the worst that can happen?

dekhn 8y ago

It's more complicated than that, but yes, the current state of medical research on humans is really far worse than it could be. Note than many of the barriers are political. For example, we want to use clinical date from the EU, but the GDPR law makes working with the data extremely challenging. Previously, I worked with GA4GH which is trying to get consent forms changed to allow more aggregation of clinical data to be re-used outside of the original trial (metastudies on millions of patients) but it hasn't really gained a lot of adoption. Other barriers are financial- there are a lot of incumbents who make a lot of money without making the system significantly better (I think of the major EHR companies here, especially Epic, but many drug makers and medical device makers fall in this category too). Even within the reasonable constraints on ethics, the field could do tremendously better but there is no political will to make it so.