Editorial: A special issue of The BMJ, led by patients [welcomes proposals for patient led articles, deadline 30th April 2024]

Andy

Andy

Retired committee member
"A special issue

To mark 10 years of commitment to patient partnership and over 20 years since our first patient theme issue, we will publish a special issue of The BMJ led by patients on 13 July 2024. We expect that most of the content will be written by patients or led by their views, including education articles, editorials, opinion pieces, and essays. We will make clear how patients were involved in each article to help showcase the various ways that we create patient partnership within our content.

We are keen to ensure this issue is curated by a range of patients with diverse experiences from diverse backgrounds, and welcome commissioning ideas. You can submit a proposal here https://forms.gle/EWe264NuvgbzU4w17 by the end of April. Since launching our patient partnership strategy 10 years ago our commitment has not wavered. With this special issue, we wish to critically examine progress in patient and public partnership, celebrate the successes, but also identify the barriers that are holding us back from realising the full value of patient and public partnership in healthcare."

More at https://www.bmj.com/content/385/bmj.q825
 
It would be great if we could submit something. Sadly I say this as someone who likely can't contribute much...

It'd be great if we could go a bit above the usual issue of ME/CFS and chronic illness and focus on the fundamental shortcomings in evidence-based medicine and how it has been misapplied to far more than just us. How it mostly ignores reality, massively overhypes underwhelming trivial benefits, which are all entirely comparable to what alternative medicine delivers, while downplaying, even making it impossible, to get a good sense of how things work out in real life, because of a complete absence of rigorous surveillance.

Something focused on the fact that it has simply not delivered and is clearly in a downward spiral, pointing out how much of it is almost a weaponized version of the asymmetry of bullshit (using more flowery language), how patient realities are simply excluded from it, despite all the performative pretense about being 'holistic' and 'patient-centered' when it couldn't be further from it.

Riffing a bit here, something titled: "Evidence-based medicine has not delivered for patients". I don't even think there is a need to add anything about disputed or controversial conditions, it really has largely fallen flat for everyone except the people who work in it. What we have is essentially the equivalent of a sham democracy, representation without, well, actual representation.

We can clearly see a growing movement to erase the lines between scientific medicine and alternative medicine, and evidence-based medicine is basically the rift line allowing this perversion to grow. While patients do want to see their lives improve despite a general lack of progress in medicine, the current way simply isn't it, it hasn't delivered, it's mostly centered on itself, on what researchers fancy, on research that follows past research but without ever building anything on it, almost never on what patients need.

If we look at progress in scientific medicine, it is constantly revolutionary, it's just that progress tends to be very localized, affecting specific conditions or diseases, and increasingly reliant on advanced technology. Meanwhile evidence-based medicine, which makes no use of technology beyond faster communication, cannot really boast a single actual revolutionary finding. It's at best small incremental progress that almost never builds on itself, all we really see is duplicating the same trivial incremental progress with a few different words. It's thousands of steps forward, all of which always have a stepping back, it simply never actually gets off the starting line.

Framed around this the fact that it could absolutely deliver good things for patients, but it can't happen without us, and the current standard of pretending to be 'patient-centered' and 'holistic' while being nothing like it only makes it harder to achieve. It's kabuki, Potemkin medicine, whatever other clever labels can be applied to it that will get academics to grasp it.
 
I have a modest suggestion: The Central Role of Leading Medical Journals and Their Editors in the Catastrophic Failure of Technical and Ethical Standards in Psychosomatics Over the Last 35 Years, and the Appalling Consequences for the Lives of Millions of Sick, Vulnerable, Innocent Patients.

:whistle:
 
Partly replying because agree this is important and also agree timescale typically screws us.

The biggest ‘sitter’ going by the three things they’ve enphasised (good, bad/issues and other) is perhaps using how decodeME actually properly started by building in proper adjustments that meant those who were there as patients to input actually had a fighting chance.

would be a great starter if someone gif across hiw indeed as long as you want to keep the timeframes the same or just a bit longer than fir norms then you are excluding patient rep from being .. well… representative.

you might find one of two who pull it off but one more query and they are rither over the edge of having to nod and people please as they’ve nothing left. But basically you are excluding any but the most well - who can’t represent the less well.

and that’s before you imagine the environment issue’ where it sounds like decodeME listened to learn and understand ie being accessible to all was prioritised when setting deadlines and deciding on anything

most involve plonking however many patients round a table set to debate/argue. Which isn’t on really. Putting aside the health stuff most other illness won’t have the level of rudeness, bigotry (and claiming it’s not), pretending not to understand wearing away at the few reps.

I think we will do better for having positive examples of you can do it - and decideME and @Caroline Struthers and maybe there is stuff done by other links the bio bank might be good ones to show up the tick box hunting fir ‘recovereds’ with conflict of interests etc we see on other studies ?
 
bobbler said:
Partly replying because agree this is important and also agree timescale typically screws us.

The biggest ‘sitter’ going by the three things they’ve enphasised (good, bad/issues and other) is perhaps using how decodeME actually properly started by building in proper adjustments that meant those who were there as patients to input actually had a fighting chance.

would be a great starter if someone gif across hiw indeed as long as you want to keep the timeframes the same or just a bit longer than fir norms then you are excluding patient rep from being .. well… representative.

you might find one of two who pull it off but one more query and they are rither over the edge of having to nod and people please as they’ve nothing left. But basically you are excluding any but the most well - who can’t represent the less well.

and that’s before you imagine the environment issue’ where it sounds like decodeME listened to learn and understand ie being accessible to all was prioritised when setting deadlines and deciding on anything

most involve plonking however many patients round a table set to debate/argue. Which isn’t on really. Putting aside the health stuff most other illness won’t have the level of rudeness, bigotry (and claiming it’s not), pretending not to understand wearing away at the few reps.

I think we will do better for having positive examples of you can do it - and decideME and @Caroline Struthers and maybe there is stuff done by other links the bio bank might be good ones to show up the tick box hunting fir ‘recovereds’ with conflict of interests etc we see on other studies ?
Click to expand...
If we really wanted to push it the you could finish by asking for a charter of adjusments / behaviour / ethics for ME - I think it’s been mentioned somewhere in a slightly related form

and could include thing like a committment towards behaviour/list of adjustments that allows a fair cross-section of reps to actually be heard without busting their limits as well as similar things on recruitment and ethics to make sure the treatment itself isn’t bring used a filter to krypton factor out the weakest then pretend the difference in ave from start to end is anything other than due to that

but not eloquent to get notes right on that and link it to the quite clearly laid out topics they’ve laid out above
 
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