"Another request for data from the PACE trial" 36 more scientists join request for PACE data

[Scarecrow]

@BurnA
I won't identify them--I think that would be wrong--but I've been blocked on twitter by them.

What do you mean about "the profession they're in?

 

[Snowdrop]

@Scarecrow

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 was looking for some sort of reason why someone with ME might defend PACE Since I don't know why I speculated.

If you have some knowledge as to why I'd like to know. It seems to me somewhat of a betrayal of PwME to support this research.
Maybe they were not harmed but certainly PACE has the ability to continue to validate harmful tx for anyone more than mildly ill.

 

[Scarecrow]

If you have some knowledge as to why I'd like to know.

I don't have a clue. It was you who referred to their profession. I'm just curious.

 

[jadam914]

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.

And indeed it is as a building tidal wave is heading there way.

 

[JaimeS]

Well, this minor/moderate ME sufferer wants PACE to be destroyed. I can't imagine the rationale for any thinking person to want bad science out there, plain and simple.

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 don't want to pull a 'No True Scotsman' fallacy, but to me PEM is indicative of ME, and if you don't have PEM and worsening with exercise, you have some other disorder. If that disorder is depression -- which does appear to improve with exercise -- perhaps you'd rather have it said that you have ME than something considered completely and wholly 'in the mind'.

Even that's a real stretch of the imagination. False science only helps people who are in some way benefiting from it monetarily, and I can't imagine a way patients are...

-J

 

[jadam914]

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...

Of course BS never adds up. "You can't make sense out on nonsense".

 

[alex3619]

Dr Horton must have meant 'traveling' in the metaphorical sense.

He was on a trip, maybe? More ways to be tripping than just traveling.

 

[alex3619]

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 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.

 

[Esther12]

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.

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.

 

[Sean]

if I'd know back then about the "piggy" incident I'd have said something about him relishing that "bacon flavour"...

Cameron is clearly not of the Islamic faith.

 

[barbc56]

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.

Unfortunately there may be patients who are unaware of this. Especially if they are not on a forum like PR where studies are frequently discussed.

This is why it's necessary to send a clear the message to patients that their fears are unfounded.

 

[TiredSam]

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.

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.

 

[A.B.]

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.

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.

 

[Skippa]

"The establishment" are dinosaurs stuck in a modern age. Trying to apply old rules of governance in a true information revolution. "Waa waaa people are supposed to believe what we tell them, it's not fair that they have access to enough data and information to figure things out for themselves".

Just go back 20 years. If you wanted to become knowledgable about something, you'd have to buy and read the entire Encyclopaedia Britannica (not cheap) and read the whole damned thing. Either that or attend a course formally laid out by the educational authorities.

Now? The internet has a million time the information stored in any set of books. People can check things out for themselves.

"Hey Doc, that treatment isn't working". "Well it should be, you are in the minority, my data says so". "Well how comes I found a hundred other people on the internet complaining about THE EXACT SAME set of complications I am experiencing"? "Well... you shouldn't believe everything you read on the internet".

 

[Valentijn]

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.

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.

The data requested would look like "CBT (trial arm), 55 (SF-36 PF starting score), 10 (CFQ bimodal starting score), 22 (CFQ likert starting score), Yes (fits ME London diagnosis)", etc. No one could conceivably be identified, or even matched with their health records, from "#10 CBT 55 10 22 Yes 60 5 12 Yes". This is the complete opposite of personal or identifiable data.

The only conceivable way that such data could identify a single patient is if 159 patients from the same treatment group got together, identified their own data, knew that Annie G Sample was in their arm of the trial, and she was not one of the people identifying her own data for the rest of the group.

But even if every one of the 159 patients in Annie G Sample's group wanted to identify her data, it's unlikely that any of them could even locate their own data based on the data requested. Can patient #52 remember if he scored 40 or 45 on his first SF-36 PF questionnaire? Or was it 50? Assuming patients were ever told their scores in the first place (they probably were not).

If I were a trial participant, I'd be far more worried about getting hit by lightning while sitting in the basement, than I'd be worried about anyone identifying me based on that data. It's simply so improbable that it's essentially impossible.

 

[user9876]

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.

I don't understand how it would even be theoretically possible. Given fluctuations in the disease and a many to one mapping for many of the variables (and probable high correlation) then it seems difficult.

There are basically 21 levels for the sf36 scale and I would be surprised to see the lower and higher end of the range within the pace data. So given their were 640 patients then its unlikely any individual will have a unique score. There are also different sets of question answers which lead to the same score making tracking back really hard. I.e. if you know someone has real difficulties with stairs it is not obvious that a given score would correspond to that answer in a questionnaire. The CFQ will be similar (although 34 levels or 12 depending on the scoring system but the structure of the questionnaire and group correlations reduces the effective possible realistic scores between the two sets of data).

With the 6 min walking test. Can you guess how far someone you know well could walk in 6 mins (if they could manage that) now how would that be changed by a journey into a hospital. Do you think it would be the same each day, how much variation would you expect?

 

[alex3619]

Trying to apply old rules of governance in a true information revolution

They are not even using old rules of governance. The principles of governance still hold. The bureaucratic rules that were created are obsolete though.

Regulations, rules, laws - these all need updating. Most countries have seriously out of date constitutions, with patch upon patch upon patch. Its hard work to reform a constitution, I do not doubt that almost everyone finds it intimidating.

Under basic principles of governance, there are watchdogs watching watchdogs. Everyone has a right to appeal or oversight someone. When there is no redress to failures in balance in power then it falls apart. In the last several decades there has been considerable effort to strip away checks on power in government, at least in Australia.

Medicine of course has limited checks and balances. Its essentially a broken system. Psychobabble seems able to get away with nonsense and still be considered untouchable.

 

[user9876]

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.

There are crystallographic hash functions which if used with a key (making it an HMAC) would convert a name to an identifier that we are reasonably sure cannot be tracked back to the original name or unless you have the key and the name you could not confirm that the two match. Such codes are fundamental to much of the security of the internet and examined in detail by many different cryptographers trying to crack them. Government trust them. So even if it were that situation then the non-identifiablility could be counted on.

As you say though the codes are not being asked for just a set of vectors of numbers and yes/no for a diagnosis. These vectors can be sorted so they are not time ordered so there is no real way of noticing.

 

[ukxmrv]

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.
.

The PACE doctors targeted some of the local London groups. At least one of them visited these groups. One particular group has / had a leader who was treated at Barts and is fully supportive of their methods and PACE.

We can't deny that there is a split in support and condemnation for Barts.

All these people at AFME and local groups haven't gone away or stopped working behind the scenes

There will be patients who encouraged others in their support group to listen to the Barts doctor and join PACE / get treatment there

I've been at meetings where a particular group leader speaks highly of BARTS. This person was closely allied to AFME when they were at their worst and supported PACE opening.

This isn't new or a closely guarded secret. In London people who attend local support group meetings, or AFME meetings or when we could go to the APPG or meetings of local group leaders have met this for years and years.

There are also closed email groups for group leaders. Vocal PACE supporters have posted there.

The battle continues as it has done for years now.

 

[Mrs Sowester]

Last night I remembered I know of one pwME who found GET useful (I know, please don't shoot me).
This lady was severe for years, needed spoon feeding and, at her worse, couldn't speak. She used the doing 10% extra every few weeks but always stopping at symptom onset GET (so maybe not true GET, more APT/GET).
She is now moderate/severe, wheelchair around the house and gets outside occasionally.