• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Do graded activity therapies cause harm in chronic fatigue syndrome?

Messages
2,125
I suspect the answer is, you can't. And I have to admit, much as I'd like this to be done, it's surely a non starter. Patient confidentiality must be preserved in terms of personal details.
Just found this; had not seen it before. Apologies if it's posted elsewhere:
https://forbetterscience.com/2016/0...tient-privacy-concerns-and-parasite-paranoia/
PACE trial and other clinical data sharing: patient privacy concerns and parasite paranoia
Leonid Schneider
data-sharing2.jpg


The PACE trial case might become a key test for the Open Data movement in academia.
“setting up a kind of ombudsman , i.e. an ‘honest broker’ who would be able to do statistical analyses from a neutral perspective. […] I don’t think the journals could do it – I’m not talking about someone to decide if data should be released, but rather a group who could agree what analyses needed doing and do them competently, in a buffer zone between researcher and critics. I am in very early discussions about a possibility of having some kind of unit with statistics expertise that would be dedicated to this, but we’d have to persuade someone to fund it. It’s possible that the uproar around PACE might just help this happen, as medical profession is concerned that nobody wants to research this topic in current atmosphere”.

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

Loads of stuff here including:
PACE trial consent form: https://www.whatdotheyknow.com/request/203455/response/508208/attach/html/3/Consent forms.pdf.html
Data from FINE trial :http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0144
 

RogerBlack

Senior Member
Messages
902
I suspect the answer is, you can't. And I have to admit, much as I'd like this to be done, it's surely a non starter. Patient confidentiality must be preserved in terms of personal details.
It seems, the issue is basically the legalese of what exactly the patient participants of the PACE trial have signed their consent to.


7. I agree to researchers contacting me after the trial is over for further follow-up, so
long as further follow up has received research ethics committee approval.
10. If I have moved or lost contact with the clinic and vice versa, I agree that my GP or
a relative may be contacted to provide contact details.

The use of 'researchers' not 'the researchers' - unless 'researchers' was defined separately in the document given as consent would certainly seem to imply the consent allows other researchers to contact the patients - given ethics committee approval.

I am sure QMUL would be happy to work with any research team wanting to do this.
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
I couldn't see if anyone else was able to get the article to download. I think I was able to. See attached.

Sorry, if someone did and I'm just late to the game. :xeyes:
 

Attachments

  • 1359105317697323.pdf
    78.2 KB · Views: 6