BMJ want patient involvement for better research: Research is the future

[Simon]

BMJ calls for patient involvement to cut down on dodgy research practices and unreliable findings.

BMJ Editor's choice
Research is the future: get involved | The BMJ
Fiona Godlee

They focus on a particular study, first targeted by a journalist who'd spotted that long-term follow-up results hadn't been published. When they eventualluy were, the authors claimed success, but critiques in other journals disagreed:

Now an editorial in The BMJ confirms the view that sentinel node biopsy confers no survival advantage except perhaps in a small minority of patients (doi:10.1136/bmj.h5940). “Any apparent benefit in disease-free survival is clearly a result of trial design and mislabelling of patients,”

The editorial looks at various ways of raising standards, but puts most emphasis on patient involvement:

Clinical research, properly done and fully and openly reported, is essential to improving the care of patients...

More than three million NHS patients took part in research over the past five years. Bravo. Now let’s make sure that patients are properly involved, not just as participants but in trial conception, design, and conduct and the analysis, reporting, and dissemination of results.

The editorial points out that in response to the now-obligatory reporting in submissions to the BMJ of patient involvement as partners in research, the most common entry is, effectivey, "none".

Our plan is to shine a light on the current state of affairs and then gradually raise the bar. Working with other journals, research funders, and ethics committees, we hope that at some time in the future only research in which patients have been fully involved will be considered acceptable.

read the full editorial (open access): Research is the future: get involved | The BMJ

 

[alex3619]

When (not if) will we read an article like this about PACE?

 

[Bob]

They focus on a particular study, first targeted by a journalist who'd spotted that long-term follow-up results hadn't been published. When they eventualluy were, the authors claimed success, but critiques in other journals disagreed

How remarkably familiar. (Except, of course, so far only patients have spotted the errors in the reporting of the long term PACE data. Hopefully that will change over time.)

 

[Esther12]

I find this stuff pretty nauseating from the BMJ, considering the way that they've dealt with CFS.

 

[Never Give Up]

It's starting to look a lot like Christmas, everywhere you turn.

The Internet can be a wonderful thing. Unfathomable access to information; intelligent, educated people publicly critiquing the "science" of others; and patients speaking up to say that the dogma doesn't match up with their experience all add up to previously unheard of accountability, and a giant win for patients.

Ho-ho-ho, merry Christmas!

 

[Aurator]

"we hope that at some time in the future only research in which patients have been fully involved will be considered acceptable."
It's almost certain they'll find a reason to make an exception in the case of ME/CFS.

 

[Never Give Up]

Given the coming onslaught of physiological evidence of ME/CFS, it won't last long. And then we will all make sure to expose the social injustice caused by the BPS paradigm and leverage the injustice to produce the needed changes.

 

[Jonathan Edwards]

The article seems to be a lot of unconnected ideas tacked together. First it is about a journalist pointing out that there was no follow up. Then it talks about clinicians being involved in research - whatever that is supposed to mean. Then it jumps to patients being involved - without giving any reasons. Good research is about good evidence. There does not seem to be any use of evidence in this article at all. Sorry, but this looks like a PC propaganda piece of the sort one most often sees in the context of bad research. I am disappointed but not surprised. Some PR members produced quite a good review (I thought) on ME/CFS for the BMJ focussed on patient involvement and it was considered not new enough. BMJ has produced stony silence in the face of the PACE fiasco. Nul points I am afraid.

 

[Sasha]

It's starting to look a lot like Christmas, everywhere you turn.

Every year, the BMJ do a special Xmas edition with humorous articles.

 

[alex3619]

all add up to previously unheard of accountability, and a giant win for patients.

It will. It should. We are not there yet.

 

[SOC]

...previously unheard of accountability, and a giant win for patients.

I think you're correct, I'm just not sure it's going to happen in my lifetime or that of the perpetrators of this horrific injustice. Maybe I'm just cynical today, but I suspect this will mostly be swept under the rug until it becomes something awful that happened in the past for which no one can be held accountable.

I honestly hope I'm wrong.