New Coyne blog: Why the scientific community needs the PACE trial data to be released

[Sasha]

Haven't read it yet, but it's bound to be good:

http://blogs.plos.org/mindthebrain/...ity-needs-the-pace-trial-data-to-be-released/

 

[A.B.]

Confirming that it is good. Coyne is pointing out how this is a landmark decision that every scientist should be concerned about.

Also some interesting parallels to other research.

 

[Simon]

Thanks, Sasha, you're right, it is very good. A really thoughtful piece at PLoS One
Why the scientific community needs the PACE trial data to be released | Mind the Brain

Not only does it say the PACE trial data should be released, but it places this in the wider context of all research data being released (PLoS, where this blog is hosted, insists that all data in papers published there must be shared).

This is interesting too:

As seen in a PLOS One study, unwillingness to share data in response to formal requests is associated with weaker evidence (against the null hypothesis of no effect) and a higher prevalence of apparent errors in the reporting of statistical results. The unwillingness to share data was particularly clear when reporting errors had a bearing on statistical significance.

He urges Queen Mary University (which is the body responsible for holding PACE data) not to appeal against the Information commissioner's ruling.

 

[Esther12]

Read it. It's good. Arguments in favour of release of data, and calculation of the outcomes from the trial's protocol, are overwhelming.

Helpful being able to get quotes from people like "University of Pennsylvania bioethicist Jon Merz, an expert from who has worked internationally to train researchers and establish committees for the protection of human subjects." Even if they're saying the same things as us, it's likely to have more impact than "Esther12, posting on the Phoenix Rising forum".

 

[Sidereal]

LMAO, @Esther12.

 

[elliepeabody]

It is very readable and an excellent analaysis of the significance of the ICO decision, and not only for the UK.

In his decision, the Commissioner found that QMUL failed to provide any plausible mechanism through which patients could be identified, even in the case of a “motivated intruder.” He was also not convinced that there is sufficient evidence to determine that releasing the data would result in the mass exodus of a significant number of the trial’s 640 participants nor that it would deter significant numbers of participants from volunteering to take part in future research.

There is a wider issue here too.

The spin, manipulation of data and attempts to demonise legitimate concerns by patients should be of interest to anyone who bases healthcare decisions on data from clinical trials.

 

[Sean]

Even if they're saying the same things as us, it's likely to have more impact than "Esther12, posting on the Phoenix Rising forum".

You mean you aren't the Supreme Ruler of the Universe?

I feel betrayed.

You're probably not even a real pink bear.

 

[SOC]

You're probably not even a real pink bear.

Say it isn't so!

 

[Bob]

QMUL research data policy:
"publicly funded research data should be made openly available in a timely manner"
"data with acknowledged long term value should be made accessible"
http://www.arcs.qmul.ac.uk/policy_zone/research/QMUL_research_data_management_policy_2012.pdf

 

[Woolie]

Despite authors’ claims to the contrary and their extraordinary efforts to encourage patients to report the intervention was helpful, there were simply no differences between groups at follow-up

You got to love this guy!

interview of Richard Horton and PACE investigator Michael Sharpe in which former Lancet Editor Richard Horton condemned:
A fairly small, but highly organised, very vocal and very damaging group of individuals who have…hijacked this agenda and distorted the debate…

Distorted the "debate"? What debate? These authors wanted to ensure there was none at all. And what is most scary is there pretty much was none, before patients raised issues.

In the past, PACE investigators have been quite dismissive of criticism, appearing to have assumed that being afflicted with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis precludes a critic being taken seriously, even when the criticism is otherwise valid. However, with publication of the long-term follow-up data in Lancet Psychiatry they are now contending with accomplished academics whose criticisms cannot be so easily brushed aside. Yes, the credibility of the investigators’ interpretations of their data are being challenged. And even if they do not believe they need to be responsive to patients, they need to be responsive to colleagues.

Kapow!

 

[Woolie]

The spin, manipulation of data and attempts to demonise legitimate concerns by patients should be of interest to anyone who bases healthcare decisions on data from clinical trials.

Would like that 100 times if I could, @elliepeabody!

 

[SOC]

A fairly small, but highly organised, very vocal and very damaging group of individuals who have…hijacked this agenda and distorted the debate…

Who knew we were this powerful? I had no idea we were "very damaging". Anyone know what we damaged? And who did it? I hope you're planning to pay for it.

Seriously though, "highly organized"? Us? I'm not sure we qualify as any kind of organized compared to other advocacy groups, or even general patient organizations.

Very vocal... well that I can see.

Again with the mythical ME militants. I wish some journalist would ask these myth-spinners to point out these highly organized, very damaging people... not just one or two individuals... a group, as Horton claims........ OMG! Is he talking about us here at PR? Surely not. Vocal we may be, highly organized we are not. As for very damaging... I have yet to see any real damage... unless you count debunking CBT/GET, ME militancy, and other myths to fellow patients as damage.

 

[worldbackwards]

Again with the mythical ME militants. I wish some journalist would ask these myth-spinners to point out these highly organized, very damaging people... not just one or two individuals... a group, as Horton claims........ OMG! Is he talking about us here at PR? Surely not. Vocal we may be, highly organized we are not. As for very damaging... I have yet to see any real damage... unless you count debunking CBT/GET, ME militancy, and other myths to fellow patients as damage.

We aren't even very vocal, unless talking amongst ourselves is a crime now. That said, they'd stop that if they could.

I think there's a notable effort in the round here to attribute their own actions (stifling debate, being a powerful lobby, manipulating evidence, whipping up a media frenzy) to us. Which is possibly the result of a coordinated campaign. Remind me who was supposed to be doing that again?

I still think he's talking about Sasha.

 

[SOC]

We aren't even very vocal, unless talking amongst ourselves is a crime now.

They certainly seem to think it is.

I suppose it does undermine their brainwashing of patients when those patients can come to PR and hear a different perspective from that of their CBT/GET pusher.

 

[Sean]

I think there's a notable effort in the round here to attribute their own actions (stifling debate, being a powerful lobby, manipulating evidence, whipping up a media frenzy) to us. Which is possibly the result of a coordinated campaign. Remind me who was supposed to be doing that again?

Projection, or what.

 

[Woolie]

Seriously though, "highly organized"? Us? I'm not sure we qualify as any kind of organized compared to other advocacy groups, or even general patient organizations.

Especially not compared to the highly organised and well funded, thoroughly legally researched appeal that Queen Mary Univ. made to try and prevent sharing of the data.

 

[SOC]

Projection, or what.

Especially not compared to the highly organised and well funded, thoroughly legally researched appeal that Queen Mary Univ. made to try and prevent sharing of the data.

Reminds me of that old, old semi-comedic shtick where some guy commits some crime, or does some nasty thing, and then with a wide eyes and a horrified expression points indignantly at some innocent schmuck and proclaims, "Grab him! He did it!"

 

[alex3619]

Even if they're saying the same things as us, it's likely to have more impact than "Esther12, posting on the Phoenix Rising forum".

Sigh, yeah. So much is still authority driven. We have said a lot of the same things, but over the years get ignored or denigrated. Its nice to have some open academic debate on this though. It gives us traction. Its also nice having a history trail on the net showing what we have said or done. I am guessing a journo or two might want to write a new book on this in time.

 

[Woolie]

 

[alex3619]

And what is most scary is there pretty much was none, before patients raised issues.

Yes, a total failure in scientific and medical community review.