Med Patient Social Networks Are Better Scientific Institutions
score: 5 (5 votes) ·
The first thing that comes to my hyper paranoid mind is what would happen, for example, if the lithium did seem to work for these patients. Who would then prescribe the lithium, and based on what? If it isn't supported by ordinary studies (let's assume it isn't) and it's not even remotely standard of care, then there's going to be some trouble.
So I'm a progressive doctor, and I look this data over and I say to give it a try; and the patient dies of lithium toxicity. Seems like they have a good case against me.
I do think it's a defensible maneuver (they could still sue me, though) but my worry is more about the very difficult position this puts everyone in. I'm not against this type of research, just wondering aloud.
I'd speculate that this is better suited for surveillance, or for identifying which subgroups benefit more or less from a treatment. Everyone's going to hate this idea, but I think it's quite realistic: it would be great if doctors in general uploaded such data to a common site, especially about illnesses for which novel treatments are lacking. Pharma could/would help cover the costs, of this I am sure.