What do you mean about "the profession they're in?@BurnA
I won't identify them--I think that would be wrong--but I've been blocked on twitter by them.
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What do you mean about "the profession they're in?@BurnA
I won't identify them--I think that would be wrong--but I've been blocked on twitter by them.
You and I cannot fathom why (although I really would like an explanation) one is never forthcoming--at least not one that makes any sense (the PACE trial is well done research!) I'm going to go with the suspicion that some people with mild ME find it personally useful to defend PACE--maybe it's the profession they're in that benefits them enough to sell the rest of us down river. But this is speculation
I don't have a clue. It was you who referred to their profession. I'm just curious.If you have some knowledge as to why I'd like to know.
And indeed it is as a building tidal wave is heading there way.I, of course, meant "vexatious" in the non-legal sense - i.e., "causing or tending to cause annoyance, frustration, or worry" on the part of the PACE authors.
Of course BS never adds up. "You can't make sense out on nonsense".Are we absolutely sure of that now? If so that's good news, means that can be argued in next appeal when patient confidentiality is raised as an excuse.
But if that really is the case why has the issue of patients not wanting their anonymised data released been such a sticking point?
Something isn't adding up...
He was on a trip, maybe? More ways to be tripping than just traveling.Dr Horton must have meant 'traveling' in the metaphorical sense.
I suspect this is the case, but until we have evidence that they did its only speculation. It only takes one person to blow a whistle.Have the PACE team (or people acting on their behalf) proactively and strategically sent out some kind of letter to all trial participants warning them, possibly in alarmist terms, of a potential threat to their anonymity? We need to hear from some actual trial participants.
I would think somewhere, someplace, maybe in a dark forbidden closet, there's someone who has access to a computer program that has the code to break the numbers and get the patient's names. But the reality of the situation is that it's almost impossible to do this and the emphasis is on the study data not personal data.
Ignorance about this issue works to the PACE authors' advantage.
Patients in general are fearful of any health information going public. Psychological information is even more worrisome.
Maybe the next move is informing other patients about the implications of releasing the PACE data.
I have no idea if the board will address this but tbh, I confuse all the "advocacy" organizations.
Cameron is clearly not of the Islamic faith.if I'd know back then about the "piggy" incident I'd have said something about him relishing that "bacon flavour"...
It doesn't matter how ingenuous a computer nerd you are, the data requested could not be used to identify participants.
It's just not that sort of data. Nothing on participants' locations. Nothing on their age. Certainly nothing like names, initials, anything like that. It looked like the data requested was carefully selected to prevent QMUL using concerns about patient privacy as an excuse for not releasing it.
Isn't that the whole point of psychobabblers widening the definition as much as possible to included tired and depressed people before another CFS "study"? This increases the chances of people who have been told they have ME/CFS improving. Can't help thinking of Crawley and her ridiculous questionnaire. Get as many people in as possible, call it a CFS study, someone's bound to improve, which gives you a number of secondary benefits. This is one of them.The only thing I can envision is that people who were part of that trial but benefited because they did not actually have M.E. might want to continue to receive the treatment that works for them.
I would think somewhere, someplace, maybe in a dark forbidden closet, there's someone who has access to a compute program that has the code to break the numbers and get the patient's names. But the reality of the situation is that it's almost impossible to do this and the emphasis is on the study data not personal data.
Released data isn't encoded, it's randomly labeled instead. So you don't get our infamous "Annie G Sample" being labeled as "Elpmas G Einna", or even a far more complex encoding of her name or any other data. Instead she appears as a number between 1 and 640, appearing in no particular order among the other 159 patients in her treatment arm of the trial.I would think somewhere, someplace, maybe in a dark forbidden closet, there's someone who has access to a computer program that has the code to break the numbers and get the patient's names.
In the QMUL case, the ICO commissioner thought that it was theoretically possible, but unlikely, and that there was no evidence anyone would even be motivated to try.
My understanding is that it's not about breaking a code but about finding other data that contains the person's name and matching that to the anonymized data. PACE data alone would be useless.
So a hypothetical "motivated intruder" would need to have a rough idea who might have participated in the trial in the first place, then access medical records of that person, and compare it with PACE data. But PACE data is unspecific things such as fatigue scores and distance walked. We're not talking about specific things such as "had surgery for pituitary adenoma in 2009".
The more one thinks about it, the more ridiculous it sounds. The ICO was right to order QMUL to release the data.
They are not even using old rules of governance. The principles of governance still hold. The bureaucratic rules that were created are obsolete though.Trying to apply old rules of governance in a true information revolution
Released data isn't encoded, it's randomly labeled instead. So you don't get our infamous "Annie G Sample" being labeled as "Elpmas G Einna", or even a far more complex encoding of her name or any other data. Instead she appears as a number between 1 and 640, appearing in no particular order among the other 159 patients in her treatment arm of the trial.
First: What @Valentijn said (post #33 & #36)
@Scarecrow
As for patients who call AfME their advocate of choice. I have read text of ME patients defending the PACE trial.
You and I cannot fathom why (although I really would like an explanation) one is never forthcoming--at least not one that makes any sense (the PACE trial is well done research!) I'm going to go with the suspicion that some people with mild ME find it personally useful to defend PACE--maybe it's the profession they're in that benefits them enough to sell the rest of us down river. But this is speculation. The PwME defending PACE are keeping a low profile--while they know AfME will do the advocacy work for them.
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