Analysis: “Nothing about us without us”—patient partnership in medical conferences, 2016, Chu et al

Andy

Andy

Senior Member (Voting rights)
Using their experience at Medicine X, Larry Chu and colleagues discuss the benefits of involving patients as partners at medical meetings

The expression “nothing about us without us” was first coined by disability rights activists to convey the idea that no policy should be reached without full participation of representatives of all stakeholders.1 2 More recently, it has been adopted by patient communities seeking broader involvement with the healthcare system.3 4 Although the drive for patient involvement has come from patients, the medical community has much to gain.5
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Open access at https://www.bmj.com/content/354/bmj.i3883
 
My concern about patient involvement in ME research is - which patients?

It seems all too easy for the BPS people to find patients to form their advisory groups who agree with everything they say, either through having had a good experience with the therapy because they didn't have ME in the first place and got better, or because they don't yet realise the harm that CBT/GET can do.

Crawley claims, I think, to work with a patient/carer group, and AfME were complicit in PACE.

I don't know how this can be solved.
 
I think that's only solvable by as many of us, who can, getting involved. I can well imagine that in any scenario, in ME research or not, that it will tend to be the supporters of a particular researcher and/or research theory who end up in an advisory group.
 
Trish said:
My concern about patient involvement in ME research is - which patients?

It seems all too easy for the BPS people to find patients to form their advisory groups who agree with everything they say, either through having had a good experience with the therapy because they didn't have ME in the first place and got better, or because they don't yet realise the harm that CBT/GET can do.

Crawley claims, I think, to work with a patient/carer group, and AfME were complicit in PACE.

I don't know how this can be solved.
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Agreed. It's too easy to be seen to be doing the right things with regard to "involvement", while you're actually stacking the deck against any substantial changes being made.
 
Snow Leopard said:
Agreed. It's too easy to be seen to be doing the right things with regard to "involvement", while you're actually stacking the deck against any substantial changes being made.
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That seems to be the operating procedure in Norway, with the LP coaches basically being presented as patient advocates who have recovered and are spreading the gospel of the totally-not-snake-oil-cult LP.
 
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