How payments from insurance companies might potentially bias proponents of CBT and/or GET for ME/CFS (such as the PACE Trial investigators)

T

Tom Kindlon

Senior Member (Voting Rights)
NHS Health Research Authority:
"It is not clear what ‘personal gain’ the investigators stood to make from the trial and, in particular, it is not clear how any remuneration they received from advisory roles would have been different depending on the outcome of the trial."
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<https://www.parliament.uk/documents...Research-Authority-to-Chair-re-PACE-trial.pdf>
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CBT = Cognitive Behavioural Therapy
GET = Graded Exercise Therapy

Let's take Peter Denton White as an example:

In the 2011 PACE Trial paper published in Lancet https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext, it was declared:
"PDW has done voluntary and paid consultancy work for the UK Departments of Health and Work and Pensions and Swiss Re (a reinsurance company)"
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In the image below from 2017, it shows that Peter White was a chief medical officer for Swiss Re.
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An article by Margaret Williams in 2003 said he was a chief medical officer for Swiss Re then http://www.margaretwilliams.me/2003/notes-on-insurance-issue-in-me.pdf .

It seems reasonable to believe that he was a chief medical officer for some, if not all, of the period between these dates. He certainly did some work as it was declared in various papers relating to the PACE Trial (though not to participants in the patient information leaflet)

This job would presumably have a reasonable salary. I previously came across a doctor who was described as having a lower position, such as senior medical officer within the organisation, showing again that the chief medical officer position was substantial. This doesn't look like the case that some doctors deal with where they conduct the odd medical assessment for an insurance case.

If one takes a case posted on a forum at face value, Peter Denton White refused a claim by someone with ME/CFS on a critical illness policy, saying the person should be required to undertake CBT/GET:

https://forums.moneysavingexpert.com/showthread.php?t=2356683&&_ga=1.158927935.44250778.1549563658#9
It is interesting that the 'school' of psychiatrists who espouse CBT/GET for ME/CFS have close links with the insurance industry. The Chief Medical Officer for Scottish Provident who reviewed my claim for Scottish Provident was Prof Peter White who also heads the ME/CFS clinic at Barts. This clinic only 'treats' mild/moderate cases with - you've guessed it - CBT/GET. Even NICE doesn't recommend CBT/GET for the severely affected, yet that didn't stop PW advising my insurer that my claim should be refused until I undertook CBT/GET again.
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See this thread for more information on the case:
https://forums.moneysavingexpert.co..._ga=1.158927935.44250778.1549563658#topofpage

In my experience dealing with people with ME/CFS making claims for disability payments of one type or another, a percentage of people give up if they get turned down for a payment. This is understandable as people are by definition ill and struggling with many symptoms and reduced energy stores; other issues can be seen as more important and less distressing.

An insurance company would have experience of this. So if they can find a way to turn down X number of claims, they know that this will likely lead to them not having to pay out on some of the claims.

Claims of this sort can be substantial: they can involve decades of payments of a percentage of people's salaries. So very often hundreds of thousands of pounds/dollars/Euros. So very significant sums.

Also with regard to CBT/GET, people with ME/CFS can have many justified reasons why they may not wish to do it.
They can be concerned that the treatments could make them worse.
They could also not wish to devote all the time and energy required for the therapies when they could be struggling to deal with the basic activities of daily living, or other responsibilities such as childcare, etc.
The therapies basically involve blaming the patient for not getting well so patients may not wish to put themselves through such a potentially psychologically damaging therapy.
So again, some people may not appeal and insurance company doesn't have to pay out.

Insurance companies basically have limits about what they could legitimately ask claimants to do. For example, it is very doubtful somebody with heart problems could be forced to have a heart transplant because of the risks involved with the procedure. Or if another intervention did not have a good success rate, it would be unlikely a claimant could be forced to undertake the intervention.

So to be able to deny claims until a claimant undertook a therapy, the insurance companies need therapies that can be claimed to be both safe and effective.

Conversely, if there were doubts about the efficacy and/or safety of therapies, insurance companies couldn't deny claims until a claimant undertook that therapy.

If the PACE Trial found that CBT and/or GET were found to be safe and effective, particularly given the size of the trial, it would allow insurance companies to deny claims and help their bottom line.

Many healthcare professionals would not be willing to deny claims of people with ME/CFS until they undertook CBT or GET. However it seems that Peter White is or was willing to do this in at one case and based on other information he has imparted, it seems to me quite plausible that this was not the only case he did this.

This makes him invaluable to an insurance company. If he was no longer able to deny claims in this way, he might be replaced by other individuals and so lose the source of income.

Trudie Chalder and Michael Sharpe also declared having done work for insurance companies so the same points might apply to them also.

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Appendices:
(1) David Tuller has met with somebody in a similar position to this. I'm unsure if it is the same individual or somebody else:
“I was also interested in further exploring the links between the PACE authors and the insurance industry. During this trip, I interviewed a woman who had struggled to obtain the benefits she was due. When she finally obtained the documentation from her case, she found that Professor Peter White had personally been consulted. The reinsurer involved was Swiss Re, where Professor White has served as chief medical officer. (A reinsurer is an insurance company that provides back-up coverage to other insurance companies.)

In other words, not only was Professor White involved in producing bad research and offering general guidance to the insurance industry based on that bad research, he also actively participated in the decision-making process in specific disability cases. At least based on the documentation in this situation, his role involved asserting that people who had not been through a round of CBT or GET that met his standards should not be awarded benefits. I wish it were possible to document how often he provided this very poor medical advice for claimants legitimately seeking insurance benefits.”
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http://www.virology.ws/2018/01/15/trial-by-error-my-six-month-review/

(2) Some people might find this article of interest: "Trial by Error: Retired PACE Investigator Peter White and Swiss Re" 7 August 2017 By David Tuller, DrPH
http://www.virology.ws/2017/08/07/trial-by-error-retired-pace-investigator-peter-white-and-swiss-re/
 
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Tom Kindlon said:
NHS Health Research Authority: "It is not clear what ‘personal gain’ the investigators stood to make from the trial and, in particular, it is not clear how any remuneration they received from advisory roles would have been different depending on the outcome of the trial."
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Yes, that 'it is not clear' phrasing was pretty annoying.

This is from the most recent PACE 'FAQ':

Would there have been any conflicts of interest, for example, the investigators’ past involvement in insurance companies?
No insurance company was involved in any aspect of the trial. There were some 19 investigators, three of whom had done consultancy work at various times for insurance companies. This consultancy work was not related to the conduct of the research. Furthermore, it is not clear how this would be a conflict of interest; other than, the interest shared by patients and health services in finding a treatment that helps patients.
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It may also be advantageous for insurance companies if the treatment is poorly tolerated. They can then portrait the patient's withdrawal from treatment as a lack of motivation to get better, citing once again the PACE trial as evidence that the treatment is well tolerated and safe.

In general insurance companies would prefer that society viewed CFS not as chronic medical condition, but as a state of mere deconditioning that can be reversed with psychotherapy and exercise. This would influence guidelines and the willingness of doctors to investigate patients, objectively document their impairment, and assist them in legal disputes over disability claims. Similarly, judges would be less willing to side with patients over disability pension claims if they believe that CFS is a condition that can be cured with psychotherapy and exercise. This angle should also be considered because the PACE authors have a long history of promoting exactly such views, while several of them are working or have worked for insurance companies.

The PACE authors have produced the kind of evidence that creates favorable conditions for insurance companies attempting to win legal disputes over disability pension claims in CFS cases. Researchers not connected to commercial interests have rejected this evidence as poor work, and have come to very different conclusions about the nature of CFS and the efficacy of psychotherapy and exercise.
 
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I think ideally that Peter Denton White should have explicitly said he has worked as a chief medical officer in Swiss Re rather than the vague wording he has used in papers:

"PDW has done voluntary and paid consultancy work for the UK Departments of Health and Work and Pensions and Swiss Re (a reinsurance company)"
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Two declarations in 2017 the same year he definitely was a chief medical officer (see above))

"PDW reports grants from the UK National Institute of Health Research and the Sue Estermann Fund during the conduct of the study, and personal fees from Swiss Re-insurance company outside the submitted work; he is an appointed member of the Independent Medical Experts’ Group, a non-governmental body, which advises the UK Ministry of Defence about its Armed Forces Compensation Scheme. PDW provided unpaid advice to the UK Department for Work and Pensions until 2015. All other authors declare no competing interests."
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https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)32589-2/fulltext

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: P.D.W. is a member of the Independent Medical Experts Group, which advises the Ministry of Defence regarding the Armed Forces Compensation Scheme. He has done unpaid consultancy for the Department for Work and Pensions and does paid consultancy for a re-insurance company. M.S. has received royalties from several publishers of academic books. T.C. and M.B. have received royalties from a book. J.B. is a director of the company Vitality360.
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https://journals.sagepub.com/doi/full/10.1177/1359105316688953
 
I agree that by any reasonable standards those declarations appear wholly inadequate. It may, of course, be the case that wholly unreasonable is perfectly adequate for these purposes.

Did he only receive fees? That suggests normal professional fees for normal consultations and ad hoc advice. It does not suggest the level of strategic involvement which seems to be shown.

In that case mentioned in the OP it would appear that the underwriting company must in the course of the normal claims procedure have arranged for an examination with a, possibly, independent specialist and that his decision was then put up to the re-insurers for his advice. There seems to be a complete failure of transparency.

One is bound to wonder whether this doctrine has been replaced (from Wiki)

Uberrima fides (sometimes seen in its genitive form uberrimae fidei) is a Latin phrase meaning "utmost good faith" (literally, "most abundant faith"). It is the name of a legal doctrine which governs insurance contracts. This means that all parties to an insurance contract must deal in good faith, making a full declaration of all material facts in the insurance proposal. This contrasts with the legal doctrine caveat emptor ("let the buyer beware").

Edited correction of omissions
 
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Since the HRA was looking at ethics and how things affected patients the important question is whether patients would have entered the trial if they had known about the paid and unpaid consultancy work, not whether that work would influence the results of the trial.

Patients did not have the full facts to give proper consent. Since this issue of consent by patients was the reason for withholding data, the investigators cannot argue that full and free consent is not important.
 
A couple of further points regarding all this:

It is the reinsurer that calls the shots on these insurance claims. So Swiss Re will likely be a reinsurer for many different insurers. The impact of somebody working for a reinsurer is therefore likely to be much greater than one working for an insurer.

In my case the reinsurer, Swiss Re, wanted to keep under the radar and specifically requested that the insurer did not mention them to me. In addition, in information I obtained under the DPA about my claim, references to PDW were redacted, but not consistently, or very well...

I have heard of cases of claims being refused because the insurer believed the claimant was not being fully compliant with the "treatment" or undertook the "wrong kind" of CBT/GET.

Another issue is what CBT/GET is available locally for the PWME to access? This was something I discussed with Jessica Bavington at the behest of my insurer. Was she involved with PACE, I can't recall?

The point that insurers hope claimants will give up is well made. Every step of the way is a battle, and I have evidence that they deliberately misled me.

Edited: for clarity
 
Also, CBT/GET was described by PDW as OMT which I understand to be "optimum (or optimal) medical treatment"

So it is not described to the reinsurer as "a treatment" but the optimal treatment.

And of course there is the terminology around the word treatment rather than management.
 
PROFESSOR PETER WHITE
Chief Principal Investigator psychiatrist Professor White has declared certain conflicts
of interest in the Lancet publication:
“PDW has done voluntary and paid consultancy work for the UK Departments
of Health and Work and Pensions and Swiss Re (a reinsurance company)”.
Prof White is in fact Chief Medical Officer for Swiss Re, a giant re-insurance
company, and he is also Chief Medical Officer for Scottish Provident.

In November 2006 senior Parliamentarians found Professor White’s close financial
involvement with the insurance industry “to be an area for serious concern and
recommends a full investigation by the appropriate standards body”
(http://erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf).
Those parliamentarians who expressed this concern included
the former Chairman of a House of Commons Science and Technology Select Committee and former Dean of Biology; a member of the Home Affairs Select Committee; a Minister of State for the
Environment; a former President of the Royal College of Physicians; the Deputy Speaker of the House of Lords, and a former Health Minister and Honorary Fellow of the Royal College of Physicians.

Professor White also does paid and unpaid work for Universities, the UK Government, the United States Centres for Disease Control, and for legal claimants and defendants (BMC Health Services Research 2003:3:25) which were not declared in The Lancet article.

White is in fact lead advisor on “CFS/ME” to the Department for Work and Pensions and was a prominent member of the group who re-wrote the chapter on it in the DWP’s Disability Handbook used by Examining Medical Practitioners, by DWP decision-makers and by members of the Appeal Services Tribunals. It is the DWP’s known intention to remove as many people as possible from state benefits, and to this end ME/CFS (or CFS/ME) is a specifically targeted disorder. It is the case that the
PACE Trial is the only clinical trial that the DWP has ever funded, and that the DWP
had open access to participants’ medical records.

The entry criteria for the MRC PACE Trial were the Wessely School’s own criteria
(Oxford 1991), which were funded in part by the Chief Principal Investigator’s own
money (JRSM 1991:84:118-121), thus giving him an unusual interest in the outcome
of the PACE Trial
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2011
http://angliameaction.org.uk/docs/Hooper-complaint-to-Lancet-re-PACE.pdf
 
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