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

adreno

PR activist
Messages
4,841
From reading the blog, it seems Schneider is understanding of the PACE authors claims that data cannot be released due to privacy concerns:

It seems, the issue is basically the legalese of what exactly the patient participants of the PACE trial have signed their consent to.

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

user9876

Senior Member
Messages
4,556
Did you read the blog? Apparently sharing with other researchers doesn't violate patient consent.


But that leads to the question what is a researcher. Can I give that label to myself. Does a researcher need to work at a university? Or do I need a publication record?

Somewhere I saw something about being able to keep information secure but universities don't have a good reputation for enforcing adequate security processes and monitoring on staff.
 
Messages
15,786
Apparently, the participants didn't sign up for public release of the data and so it cannot be done.
No, there are two separate issues. One is "personal data", and the other is the anonymized data from participants. Restrictions regarding the sharing of outcome data only apply to data which can personally identify patients.

No personal data is requested from PACE, and anonymized individual data from other trials is often made completely public already, such as in the case of a recent FINE trial publication.

The PACE team is erroneously (and vexatiously :D) expanding "personal data" to include "all data".
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I thought this was generally good, with a few misconceptions - I liked that he published an exchange with Wessely in which someone challenged him on why there was a need for a broker for the data.

There are some excellent comments - really stellar. I've just left one that's held in moderation (or the universe has eaten it).
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Did everyone else's comments go straight through? I think I'm stuck in his spamtrap. :(
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Very good comment from D.G. at the bottom, which I think is new? Not the only good comment there, but this one stands out to me. Worth going to read the others as well though.
 

Invisible Woman

Senior Member
Messages
1,267
It is my understanding that the participants' will have allowed access to their medical records as part of this trial and presumably these records will have been updated as the trial progressed. These trials took place in an NHS hospital setting so this data will ultimately be available (although not in a nice, neat, ready to use form) under care.data anyway.

For those of you not in the UK: care.data has 2 parts. One allows the uploading of your GP's medical records. You can opt out of this part. The 2nd part consolidates all of your hospital records and stores them in one place. You have no choice here. Pseudo-anonymized data can then be sold to anyone who wants it- without your knowledge or permission - because it is pseudo-anonymized the data protection act doesn't cover it.

Now the thing with pseudo-anonymized data is that if you buy several datasets that include records from the same person /people it is possible to identify them.

So, it is possible this data will be available for a price anyway. If you are motivated enough to figure out and buy appropriate datasets.

Anyone who wants to know more about care.data:
http://www.care-data.info/

It is possible I am mistaken in this but I don't think so...
 
Messages
15,786
These trials took place in an NHS hospital setting so this data will ultimately be available (although not in a nice, neat, ready to use form) under care.data anyway.
This isn't the sort of data which has been requested, nor which should be at all available to the public.

The data requested from PACE is simply stuff like questionnaire scores and treatment arm. Even age, length of illness, enrollment data, and similar are not being asked for. It would be literally impossible to identify anyone with the requested data, even if collated with data which is personal.
 

Invisible Woman

Senior Member
Messages
1,267
This isn't the sort of data which has been requested, nor which should be at all available to the public.

I know. The PACE crew claim to be denying access to fully anonymized data requested to protect patient confidentiality. However, open.data makes it possible to access parts of patient records albeit pseudo-anonymized. If you have access to multiple datasets then it is technically possible to identify patients.

So I am suggesting that deny access to fully anonymized data from the research trial is a bit like carefully locking the gate to a field with broken fences.