PACE trial data

Inara said:
No, mine not. But the archiving system my husband is building up is supposed to save more data, e.g. that about the Trojan findings.

Edit: Just wanted to say that my impression was that documentation of programs is not a favorite, leading to the problem that new people don't understand it properly.
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Archiving may be a very different thing. You may need to pull in data in different formats, that use different acronyms or names to means the same thing, or the same terms and acronyms that mean different things.....all sorts of complications.

Here we are talking about a database set up for a single trial. They have either sent the data from the different sites to one location to be entered or else merged databases at some point. So we already know that there is no problem with multiple sources or multiple defintions of terms etc.

What QMUL are saying is simply not credible. Or if you choose to believe it, they have extremely poor standards.
 
This might be of interest here:
QMUL
Research Data Access and Management Policy

"
Data management, including planning for long-term storage and sharing, is an increasingly important
aspect of the UK Research funding environment. Most grant applications for research
which will generate digital data sets require a data management plan that meets the
2011 Research Councils UK (RCUK) policy; this states that:
‘Publicly funded research data are a public good, produced in the public interest, which should be
made openly available with as few restrictions as possible in a timely and responsible
manner that does not harm intellectual property:’
ETA: http://www.rcuk.ac.uk/documents/documents/tnsbmrbrcukopendatareport-pdf/

http://www.rcuk.ac.uk/research/data...-practice-in-the-management-of-research-data/

"There are data management roles and responsibilities for both the institution in the provision of infrastructure and procedures, and within specific projects for the data generated or used. Data Management Plans (DMPs) are an important tool in the management of data. Preparation of a DMP should normally be integral to the planning of a project that is wholly or partially funded by any of the Research Councils, whether or not it is required as part of the formal research grant application."

"
As of May 2012, RCUK required all funded universities to have a data management
policy and road map in place, that will be fully implemented by 2015 to meet their
expectations for data sharing"

http://www.qmul.ac.uk/media/arcs/po...a_Management_policy_for_publication_Dec13.pdf

eta2:
a bit of a short version of all of the above
"Deciding early on which data to keep, which to discard and in which file format will also inform your decision on where to store your data and to estimate the costs of preserving it, in the long and short term. Storage and preservation costs should be included in your funding proposal. Planning ahead means that the unique data you have collected will be easily found, accessed and re-used by you and other researchers (if appropriate)."http://www.ucl.ac.uk/library/research-support/research-data/best-practices/guides/storing
 
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I have a feeling that if this was a drug trial it would be mandatory to retain records for at least ten years. In the old days that rarely happened because documents were thrown out when people moved offices but in this case it seems the data re still in existence. I have a strong feeling that failing to make them available on grounds of needing specialist access skills is unethical.

Again, it seems to me there is a double standard for drug trials and therapist-delivered treatment trials. There is a naive assumption that therapists-delivered treatments are not commercial, but somehow 'in the public good'. I think they need to be just as accountable as drug trials - particularly in terms of adverse events, but also documentation and access to data.
 
Jonathan Edwards said:
I think they need to be just as accountable as drug trials - particularly in terms of adverse events, but also documentation and access to data.
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According to the documents I have posted above , in respect of data storage and accessibility (particularly if the research was funded by the state) they do have the same responsibilities.

eta: if QMUL knew that PW was going to leave and was the only one who could 'locate' the data, then they had a duty to ensure that the knowledge was passed on to someone else or documented somewhere, (as they are in effect its 'custodians').
You would think also that this was just common sense........
 
Thank you for all your comments. I don't have the time unfortunately (for the obvious reason) to reply to everything. I have noted some points, though much of what has been argued I put to the ICO when she told me in October she was minded to find the way she has. My impression (partly on the extraordinary time taken) is that she viewed my complaint favourably and did go back and argue with them as much as she could, but was tied by the previous decision.

The case is about access to data according to the terms of the FOIA, so while the UKRC and MRC guidelines are of interest they do not ultimately carry weight. In any case, I think QMUL would argue that it is storing the data securely and the raw data are available to bona fide researchers, and so it is fulfilling its requirements.

I am in effect not appealing this decision but the other one mentioned above and which was relied on in this instance. Since that decision did not go to the IT, then I think it's worth a shot.

Essentially I'll be arguing (abbreviated version):
1. Providing the anonymized data from the raw data is not 'creating'.
2. Because QMUL, as a university, has always been able to provide this data, then it has in the terms of the decision always held and continues to hold it, and should provide it.
3. It is part of the function of a university to store data and so it is reasonable for the ICO to insist it provide the information requested.

I'll put in some other stuff as background.

As I say, I welcome input and do read it, but I am restricted so I can't reply to everything.
 
As the DWP part funded this trial, presumably "in the public interest", if the secretary of state for work and pensions requested this data are they seriously telling us they would just tell her, "sorry minister the bloke what deals wif that dont work 'ere no more".
 
chrisb said:
Lord Winston apparently has a son called Joel.

EDIT It is probably unlikely that this is he, but given the speech made in the House of Lords on an earlier occasion by Lord Winston it would be unfortunate if this were a relative of his.
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0b0b84e.jpg

https://uk.linkedin.com/in/joel-winston-b7286473
 
Sean said:
We are wandering into some problematic territory here, folks.

Unless we have hard evidence of both the connection and any related wrongdoing, then best to back off and leave well alone, IMHO.
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Even if they are connected it is irrelevant.

Lord Winston is part of the medical establishment who seemed to be believing the PACE trial unconditionally and being fed what to say. I suspect now more concerns have been raised, the data has shown results were spun and there are peer reviewed criticism then I suspect some will be more cautious in accepting the PACE stories.

It seems concerning that QMUL are still basically trying to cover the issues up rather than acting on concerns raised and doing a proper governance job. This is the real issue and it should reflect on their senior management and council rather than lower level employees.
 
Given the way the controversy around PACE is presented, it is often worth trying to think about whether posts could be made to look bad to those unaware of context, and sometimes that might limit speculations on the forum.
 
Invisible Woman said:
See this is what I find really odd.

If I was deciding whether to dish out a research grant and they were in the running if I saw this there is no way in hell I would give 'em a penny.

It is so completely unprofessional. Maybe they think it will go unnoticed?
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The people dishing out research grants aren't exactly keen to have greater scrutiny on PACE.
 
Invisible Woman said:
See this is what I find really odd.

If I was deciding whether to dish out a research grant and they were in the running if I saw this there is no way in hell I would give 'em a penny.

It is so completely unprofessional. Maybe they think it will go unnoticed?
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Maybe this information re their inadequacies re data storage/retrieval should be passed on to the relevant grant awards people.
It is obvious from my previous sentence that I do not have enough grasp of the terminology to pursue this. Anyone else who could follow this up?
 
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