Yesterday I made the assertion:
“Closed access means people die”
I have no doubt this is absolutely true. I put it in the negative form because I want to drive home the inequity of walling information that, if released, could save people’s lives. In #oss2011 we’ve now had clear proof of this.
We’ve had a wonderful survey of the involvement of patients in their own diseases. I’ll exemplify this with Lorenzo Albanello, a scientist who suffered from a visual aura. His doctors all said it was migraine, but it wasn’t – he had main brain scans / MRI and it was due to a vascular anomaly. He visited specialist who gave him contradictory and varied advice.
So he went to the web and created http://lorenzosbrain.blogspot.com/ where he published his brain. You can see the anomaly
And he asked the world for advice:
What’s the best decision to make?
my name is Lorenzo, I’m a biotechnology researcher, I am 27 and I’m writing from Italy. Since I was a child I have experienced the occurrence of generalized seizures, however such phenomena were rather sporadic and resembling normal faintings, so I haven’t investigated the problem for long time. When I was 22 I went to see a neurologist after a new epileptic fit and she prescribed an MRI exam. So did I, discovering an arteriovenous malformation in the left frontal area of my brain. My reaction was rather careless about it, so I didn’t take care of the AVM nor did I want to take an anti-epileptic medication. I just continued my normal life without any trouble.
He also posted the six options he was given (some of which had substantial risks of death (15%)).
Happy to say he picked one that worked and he is fine. I salute his brave venture. But he also said
“because I am a scientist I was able to read the [closed access] medical literature”
If he had not been able to do this he might well be dead.
Access to the medical literature saves lives.
As patients said “we don’t care about privacy, we want to be cured”
Let’s try to make access to all scientific literature a human right.