The HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE)

Andy said:
I believe that it is important for us to be pointing out the flaws with this now so that we can better resist those who will want to use this in the future to either impede change to a better model or want to reverse any improvement that might have already occurred.
Click to expand...

I understand the desire but if the basic structure of a study is guaranteed to produce no meaningful result - like being a set of uncontrolled observations, as here, - nothing more needs to be known.

This was the bottom line with PACE. There was no need to go in to detail. It was not an effectively controlled set of observations. You cannot really argue a case with people who do not recognise these most basic requirements. They will make use of what they want anyway.

The problem with picking out detailed flaws is that there is always a way for the authors to say they aren't fatal. Like all the debate about diagnostic category shifts and outcome measure shifts we had before.
 
I was thinking it would be useful to have a clear argument to make to people not as informed on this as to why the study is problematic, like when speaking to MPs for instance. Or indeed patients, charities or anyone holding the study up as an example of ‘something being done’. So I like and agree with the point @Andy has made.

But the point @Jonathan Edwards makes is sadly true and we could get caught in the weeds arguing over details with people who have reasons to ignore them, are not acting in good faith or just miss the point.

Maybe it’s another case of knowing the right approach for the right audience? There are some we will never persuade and its useless trying, but having some basic solid arguments can still be useful in other contexts?
 
Jonathan Edwards said:
I understand the desire but if the basic structure of a study is guaranteed to produce no meaningful result - like being a set of uncontrolled observations, as here, - nothing more needs to be known.

This was the bottom line with PACE. There was no need to go in to detail. It was not an effectively controlled set of observations. You cannot really argue a case with people who do not recognise these most basic requirements. They will make use of what they want anyway.

The problem with picking out detailed flaws is that there is always a way for the authors to say they aren't fatal. Like all the debate about diagnostic category shifts and outcome measure shifts we had before.
Click to expand...
Well, I respect your opinion but I will continue talking about issues that I think are important, and particularly ones that transcend this study, like how important it is to adequately represent all aspects of the patient community in decisions about care of people with ME/CFS.
 
Andy said:
like how important it is to adequately represent all aspects of the patient community in decisions about care of people with ME/CFS.
Click to expand...

OK, but I think the argument here is that the services being studied do not even reach the community that needs care. Whether or not the results produced are biased by this is unimportant, because they were never going to be meaningful.
 
Jonathan Edwards said:
OK, but I think the argument here is that the services being studied do not even reach the community that needs care. Whether or not the results produced are biased by this is unimportant, because they were never going to be meaningful.
Click to expand...
An argument, yes, but not the only one. I understand that you feel that there is no need to address the representation issue, I don't.
 
Jonathan Edwards said:
That is simple. There is no way of knowing how well people will do without the service and therefore whether the service does any good if you have no comparison.
Click to expand...
Surely that is not a convincing argument to someone who has been briefed ‘we are comparing services to no services’
The study will follow around 3,000 adults with LC or ME/CFS for 15 months, recruited from four NHS service models; Leeds, Leicester, Hertfordshire and Cornwall, and from a national cohort of people without access to specialist clinics. This will allow comparison of symptom trajectories, health and economic outcomes, and care pathways across different approaches to service delivery.
Click to expand...
 
Jonathan Edwards said:
OK, but I think the argument here is that the services being studied do not even reach the community that needs care. Whether or not the results produced are biased by this is unimportant, because they were never going to be meaningful.
Click to expand...
That is a great argument though. It fits in with the ignored population argument. I do think we need to be able to clearly explain why expanding the rehab based services to this ignored population is inappropriate though.
 
Andy said:
how important it is to adequately represent all aspects of the patient community in decisions about care of people with ME/CFS.
Click to expand...

The other problem here is that these rehab units continue to exist largely because people with ME/CFS, at least to begin with, accept that a physiotherapist is likely to help them. A high proportion will feedback that the physio was nice (like Beth Dobbin) and so on. That is what HERITAGE will use to justify itself. Advocacy groups call for multidisciplinary care and work with the rehab people on PROMS and apps. I have found it very hard to convince advocacy groups that we do not need it.

I am sure that we are currently wasting at least £25M p.a. on counterproductive physio services alone. if we could persuade the government that a £5M p.a. over 3 years investment in research that is quite likely to point to effective treatment is more sensible, it would be good.

There is also a problem with patient groups calling for off-label medicines and the sort of services provided by private "ME literate physicians", but I won't dwell on that here.

I think there has been a problem that people with ME/CFS do not necessarily know what they want, or at least what is worth having. That, fortunately, does seem at last to be changing, and I think at least in part as a result of robust debate of this sort.
 
Jonathan Edwards said:
The tragedy is that the NICE committee then muddied the waters and let all this stuff back in.
Click to expand...
I didn’t think NICE had been involved again? I must have missed that. Can you tell us more, it may be useful.
Jonathan Edwards said:
OK, the issues a bit more subtle, but not much. They just require the someone to have a basic understanding of human nature. That may be a big ask I suppose.
Click to expand...
Yeah, particularly if dealing with (political) decision makers!
 
Okay I see the shape of the argument.

Heritage is claiming to study the effectiveness of services vs non services
We already know from the extensive NICE led analysis of the evidence base that the current model of rehabilitation based services is ineffective
There are additional problems with the study design and how it is being run (some more detail needed here)
Most importantly none of this touches on or reaches those most in need of care, the severely and v severely ill

Asking the same questions again (until people get the answer they want) seems a waste of everyone’s time and money as well as repeating mistakes of the past (see PACE). Especially when respurces could be better spent and are so desperately needed elsewhere

Can this be tweaked into something useful but remain concise?
 
I'm still planning to do a complaint to both the Heritage team and to the funders of the study.

I think we have several levels of complaints, including crappy inaccessible technology, impersonal communications, inappropriate questionnaires, poor sampling plan, false assumptions about rehab approaches, opaque analysis planning and inability of the study to look beyond a failed model of treatment and therefore to provide useful information.
 
You must log in or register to reply here.
Back
Top Bottom