PACE trial and other clinical data sharing: patient privacy concerns and parasite paranoia

[Cheshire]

Seems like Leonid Schneider is not finished with PACE...

https://twitter.com/i/web/status/696762567583207424

 

[Sasha]

I like Ollie's comment!

https://twitter.com/i/web/status/696717595702116352

 

[Large Donner]

From reading the blog, it seems Schneider is understanding of the PACE authors claims that data cannot be released due to privacy concerns:



Apparently, the participants didn't sign up for public release of the data and so it cannot be done.

Well if you cant release data of a scientific trial what the hell is the definition of a publication of a study.

 

[Bob]

I like Ollie's comment!

lol, brilliant!

 

[Esther12]

I thought this was a good piece of journalism from someone who hadn't had time to look in detail at all the issues, but was trying to be fair and balanced. Overall, I thought he was rather too fair to PACE/Bishop/Lewandowsky considering their positions, but then I would think that. Also, it takes time to appreciate the details that undermine some of their points. It looked like maybe he hadn't reached out to any PACE critics, and it would have been nice to get their responses, and then see if PACE/Bishop/Lewandowsky had anything to say to that. But that could have gone on for quite a few rounds.

Overall: good introductory piece... I'd have been over-joyed to have seen this a year ago, but Tuller/Coyne, etc have now raised my standards! Also, with the open data people, it doesn't matter so much if they do not understand all the issues so long as they want to make the data available to those who do.

 

[Sean]

Go Ollie!

 

[Cheshire]

Leonid added a comment of Simon Wessely's view on data sharing.

I sense that people are starting to wake up to the fact that open data/ data sharing is not as straight forward as it first seemed. In this country and elsewhere there is a complex legal framework around data sharing, and one that is also constantly changing in the light of two particular issues. The first is the fiasco of “care.data” [https://www.england.nhs.uk/ourwork/tsd/care-data/ -LS] in this country, and no doubt similar issues elsewhere, which means there has been a loss of confidence in our existing systems of data sharing and linkage, and increasingly people are wanting to have more say in what their personal data is used for.

https://forbetterscience.wordpress....parasite-paranoia/comment-page-2/#comment-350