The Guardian: Why open access to medical research matters

Openness Movements
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“In other words, hiding research papers behind a subscription paywall – as is the case for an estimated two-thirds of all research – could be killing people. There are countless examples of how failure to share science openly can have a devastating impact on public health.”

"In December 2002, a Belfast teenager made world headlines after his father, Don Simms, won him the legal right to access an experimental drug. Jonathan Simms had been diagnosed with variant Creutzfeldt-Jakob disease (vCJD), a cruel and fatal neurodegenerative condition that gives sufferers an average of one year to live.

After receiving the drug pentosan polysulfate, Jonathan lived for another 10 years, defying all medical expectations. The court ruling made medical history: until that point the drug had only ever been tested on animals, and the legal decision opened doors to treatment for other patients.

Key to Don Simms’s success in the courts was that he had been able to access the latest medical research findings on his son’s disease online, which was how he heard about the new drug."

HT: @jon_tennant

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I get the impression that openness and reproducibility in medical/clinical research really lags behind basic science. Recently, I was trying to get some CT scan data for human sinuses and found 8 relevant papers from the last 10 years, none of which described data availability (I think most were in subscription journals as well). I wrote to each of the 8 corresponding authors, and the two of which replied both said they no longer had access to the data, but even if they did, they would not have been able to share it with me due to patient confidentiality reasons.

I’m not sure how representative my experience is of data availability and openness in clinical research. Can anybody else comment? While I understand that patient privacy concerns exist in medicine, it seems like sharing raw data is very rare and there is probably little re-use of patient data.

On a side note, for anybody access to CT and MRI scans, check out: https://www.cancerimagingarchive.net/

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What more specifically in the CT scan data is not or cannot become anonymous? Or do I misunderstand what they mean with confidentiality in this case?

Maybe @gustav.nilsonne has some thoughts on this type of data.

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Here is a project which is trying to solve the problem for MR of the head: https://github.com/CPernet/open-brain-consent

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I think that all of the studies I looked at were reusing data obtained while scanning as part of a clinical diagnosis. So I assume that any consent was more focused on making an exception to the usual patient confidentiality rather than in the academic context of reproducibility and openness.

The case of CT/MR head imaging is interesting as if soft tissue of the face is included scanned, it’s quite easy to then reconstruct a likeness of a persons face.

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I’m not sure if people would consider that a breach of anonymity, as I guess it could be used to identify them if they have a distinctive facial structure.

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