Towards an institute for patient-led research - Trish Greenhalgh, BMJ blog November 12, 2019

Trish Greenhalgh is professor of primary care health sciences at the University of Oxford.

https://blogs.bmj.com/bmj/2019/11/1...owards-an-institute-for-patient-led-research/

see also this thread:
https://www.s4me.info/threads/rethi...d-health-care-greenhalgh-weiringa-et-al.5777/

https://twitter.com/user/status/1194261551391358982

 

I think S4ME does a much better job than any institute led by someone as ill-informed and woolly minded as this is likely to.


Moreover S4ME is actually patient led, not pseudo-patient led by 'academic general practitioners'.

 

That's...rather insulting, as well as surprisingly ill-informed. She's seriously saying there have never been any 'negative tension generating' conflicts as regards HIV/AIDS or mental health? I seem to recall there being many back when HIV/AIDS wasn't being taken seriously, and still ongoing in the mental health sphere. Is she another of the SMC and/or PACE bunch perpetuating their invented narrative of 'ME/CFS patients vs scientists' rather than the reality of ME/CFS patients vs bad science? Can't understand why she would specifically single out ME/CFS patients as she did there, unless that was the case.

 

This tweet of hers was posted as Montgomery retweeted it:




Once again, the BMJ saying all the right things about patient engagement in the abstract, and then being driven by ignorance and prejudice when ME/CFS patients dare point out truths that go against researcher's interests. A decade ago I would sometimes fall for it.

 

Indeed, I now see by looking at her reference for that claim, reference [28], that it quite laughably is an old Guardian article from 2011 called 'Chronic fatigue syndrome researchers face death threats from militants'! Oh dear. If that's an example of the type of 'research' she does on a subject prior to writing about it, it doesn't bode well for this new institute she proposes (if it is going to be she who will be leading it).

 

“Wanted to highlight this bit
Derya Unutmaz said:
The last comment I can make is that in the past several months, we have tried to engage the community through the opportunity of the center, both through social media as well as through the blog. We hope to increase these efforts. I have to say that the response and feedback I have gotten has been overwhelmingly positive, and we hope that the community continues to appreciate our efforts to provide insights into our scientific process and progress.

We also love the feedback we get – both the critical feedback as well as the ideas about the research. I have received several ideas from patients that we have actually decided to incorporate into our work. We learn from the patients and the community, so it is a very beneficial relationship for us as well that we hope we can cultivate.” ( @Andy )


See above #6 https://www.s4me.info/threads/scientist-spotlight-derya-unutmaz-m-d.1886/

Anyone care to tweet above to Tricia Greenhalgh

Edit: tidied up.

 

She's was keynote speaker today at a conference in Oslo.

https://twitter.com/user/status/1194610936012845057


I hope someone told her about the Norwegian research council's huge success with involving ME patients in distributing an earmarked allocation for ME research.

 

It pretty much makes the case. The "conflict" in ME is precisely disastrous because the patient community has been contemptuously excluded and maligned by the researchers who dominate it despite having no useful understanding. This is actually a great example supporting the need for patient engagement, as we are the best example of what happens with the exact opposite of patient engagement, when the needs and demands of the patients are not only dismissed but enthusiastically contradicted and proudly disrespected.

Problem is most people don't get that it's precisely because the researchers have successfully shut down the community from being heard at all, maligning us so they can maintain a stranglehold that serves only their interests at our expense.

Especially when noting the success of AIDS, where the exact same thing happened until things were turned upside down and a maligned community was turned into a full-fledged partner. This is what needs to happen with ME and those examples make the strongest case for why ME is thoroughly broken because of a rejection of any involvement from the community.

Which is all seriously ironic in a discussion over patient engagement, pointing at the very best example of what happens when patients are completely shut down, even maligned. That Greenhalgh would actually promote the viewpoint of researchers who did the exact the opposite of what is being proposed is impressive, as she is repeating the very conflict by taking their word as gospel truth while dismissing ours, the very cause of this conflict.

 

It seems that the idea is to use a donation from the family of a researcher with diabetes to set up doctoral fellowships in pseudo-subjects like primary health care and translation health science. It looks extremely patronising - a way to encourage CSWDNRTB*.

We are doing way better than this. S4ME has at least one patient representative seriously involved in planning an MRC research proposal. We have Keith Geraghty doing real research with some funding at least for the time being. Patients and carers are intimately involved in steering committees and funding charities. In the US patients and carers have been deeply involved in real research for a good while. Not faffing about with 'translational health science'.

This looks to me like a political sham - no more than a fresh tablecloth on the same old feeding trough.


*citizen scientists who do not rock the boat

 

Citation 28 is a newspaper article. Not very scientific!

 

Who or what is moving towards this ephemeral Institute?

 

Is there not an ironic conflict between supposed support for patient involvement in research and also extolling the views of Sir SW? Who can forget the famous

In addition, we believe that understanding of the postviral fatigue syndrome has been hindered by doctors who suffer from the condition also
researching it ?

Well, not me, obviously.

 

To be fair she does mention these situations

Oh gosh, what am I doing reading this and commenting. Am I losing my mind? Time to log off......

 

Arts Council England created several of these, when someone decided that purchasers of arts provision for children & young people (schools, mostly) needed to be 'put in touch' with artists. Doing so, they said, would enable more and better art to happen.

They created bridge organisations, full of non-artists on nice salaries and pension schemes, which sucked up lots of the funding that used to go to the artists. The artists had never expected a salary or a pension scheme, but due to ever-decreasing funding, were now able to earn less than they did 20 years ago.

Many were forced out of working with young people altogether, taking with them their talent, expertise, and the decades of experience they'd previously been able to pass on to the next generation of artists.

Schools, needless to say, had had extensive direct contacts with artists since the theatre-in-education movement began in the 1960s. Many teachers were skilled at embedding the arts within the curriculum, at recognising excellent practice when they saw it, and at finding ways to involve artists in CPD as well as young people's learning. Only now they had fewer to choose from, and they were often under-trained and less experienced.

I'm sure it'll be equally marvellous in medical research.

 

I see no way of doing a response so I used the commenting system. Could have been better, my mind is pretty foggy today, but here goes in case it's censored:

 

I wonder if Trish Greenhalgh at Oxford would be willing to meet with Jamie Strong, and hear about his patient led research into ME with Karl Morten at Oxford? Could she be turned around into a supporter?
https://www.wrh.ox.ac.uk/team/jamie-strong

 

Some of these communities share ideas for research and self-organise to undertake self-experimentation, self-surveillance and even analysis of their own genomic data. [23, 24]

How condescending can you get? This forum determines the direction of MRC research projects, no faffing about with examining people's own DNAvels.

I don't suppose Dr Greenhalgh has ever influenced an MRC project.

 

I would like to take a look at my genomic data, once it's done and I can get my hands on it.

This evening I asked my brother again about worsening of symptoms after exertion and what he described is very similar to what I have. He agreed that it's cumulative and delayed. He is significantly less ill than I am.

Maybe we will be able to contribute to solving the ME/CFS puzzle.

 

What is this PhD worth if this person has one?

- Me, every day in my PhD program.