Peter White et al: Releasing patient data from the PACE trial for chronic fatigue syndrome

[Simon]

Thank you @Simon for your rebuttal. It was very well written!

Thanks! Though not a rebuttal: I didn't know what Peter White was going to write, or even that he was going to write. I just happen to have a very different view.

 

[Large Donner]

The issues we raise here concern not only the PACE trial but also many other studies, as concerns about patient consent apply to all medical research programmes involving people, including studies into sensitive topics and stigmatised illnesses.

I can translate: a pre-specified plan for statistical analysis is important to ensure that the conclusions other researchers make do not contradict our interpretation.

Is this like the scientists' version of a super injunction that celebrities slap on people in order to maintain their own hype? Or perhaps its like a prenup, maybe its like a gagging order or maybe its a prenup superinjunction gagging order. Does it come with a pay off also or just a inbuilt clause of legal action if you dare to interpret basic English words like recovery or improve the same way as they are defined in the dictionary?

Hoorah for science!!

 

[Woolie]

Wow. White et al are trying to appeal to the lowest common denominator here: other researchers' fear that recruitment for their own trials may now be slowed!

Actually, its i very crafty when you think about it. They thought: "how can we side-step the real issues, and gain support for our position?" Answer: by making it sound as though every researcher has something to fear from this controversy!

There is no mention of the elephant in the room - the information commissioner's/tribunal's judgement that fully anonymised data is not considered personal data, and therefore does not require the patient's consent for it to be released.

I'm sympathetic to the #MEA article. Please, PACE authors, can we get away from the craftiness and dissembling now and actually address the real issues about patient treatment and welfare? Is that too much to ask from a group of researchers claiming to do work in the service of patients?

 

[Glycon]

I'll just leave this over here.

 

[TiredSam]

Wow. White et al are trying to appeal to the lowest common denominator here: other researchers' fear that recruitment for their own trials may now be slowed!

Evidence, Mr White? When I gave loads of blood to be used in CFS research I specifically asked the Dr what they would do if asked to share data, and if he'd said "say no" I'd have said "well you're not having my blood then". He actually said "we would have to share it, of course, that's how science works". I then proferred my arm willingly.

 

[AndyPR]

The thing that surprises me the most is that there are no comments on either blog, maybe not a lot of people know about them. Can somebody point the White one out to Fuller, Coyne and anybody else who might be interested in commenting directly on his post?

 

[user9876]

Wow. White et al are trying to appeal to the lowest common denominator here: other researchers' fear that recruitment for their own trials may now be slowed!

Ultimately it is scandals such as PACE where researchers withhold important data from patients and spin their results and the lack of desire from the medical community (e.g. BMJ) to tackle the issues that will leave patients with a bad feeling and not wanting to take part in trials.

 

[taniaaust1]

thank you Simon, excellent article.

 

[worldbackwards]

Patient Editor clearly has more sense than the actual editor.

https://twitter.com/i/web/status/778947634610470912