Declaration of Helsinki embraces health equity, 2024, Nature Medicine editorial

[Hutan]

Thanks for the link to the San code for research @bicentennial

Researchers have deviated from the stated purpose of research, failed to honour a promise to show the San the research prior to publication, and published a biased paper based upon leading questions given to young San trainees. This lack of honesty caused much damage among the public, and harmed the trust between the collaborating organisation and the San.

Requiring researchers to front up and share their research with the participants and community prior to publication is one good way to make research better.

I posted this in another thread but it seems relevant here

I agree @Ravn, we need to find ways to do the things you list. I'd love to do a study of some of those things.

I think this can and may be done, in these very possible avenues, exactly as outlined here and there by @Ravn - and done in stream-lined ways to be easy for everyone inclusively

It's just finding those 'stream-lined ways to be easy for everyone'.

There's also this thread with an idea quite similar to the San's code
Making a 'Charter for Ethical ME/CFS Research'

But, then, the patient organisations could use that charter with the research they fund, and the research they promote. They could ask NIH to adopt it for the research it funds. They could tell the ME/CFS community - 'don't engage with researchers who don't ascribe to the Charter for Ethical ME/CFS Research', or whatever name is used for it. They could ask good researchers to mention compliance with the charter in their papers, alongside compliance with the Helsinki Declaration rules.

It wouldn't solve all the problems, but it could start to take some control of what research is done about us. We do have power, and that is our funding of research and our participation in research.

 

[bicentennial]

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And also we too have a controversialised history for which:

- either we have enough capabiity to service it
- or we need the service that does

- if it needs paying for, it means we have the capability but not the spare capacity however this is not breaking boulders, it has been pioneered already, there is a prototype can be adapted and a map, here:

Parallel Histories : THEY did it SO ... ... they DID it



Parallel Histories is a UK charity
- registration number 1174481

hugh@parallelhistories.org.uk

This service could produce a module to bring the ethics committees (and their upstream governances and all associated) up to date up this steep learning curve still putting them off otherwise, then they can all make their decisions fully informed and impartial, at long long last, so if the UK won't pay for it I could chip in a bit

Our Mission, Work, Method, Proven Impact

- think critically, to analyse and debate contested histories

- equipped with the skills to navigate conflicting narratives

- participate in healthy, civic and democratic society.

- collaborate across community divides

- learn how to think without being told what to think

- views are informed by precise knowledge and a greater sensitivity and tolerance to views different...

- Over time build a nuanced understanding of how histories have been constructed

- guide in how to analyse sources as evidence, rather than as arbiter of truth.

- safe platform for free speech, both online and face to face

- communicate ideas respectfully

- disagree agreeably

- through careful listening and exchange of ideas, grow to recognise that despite differences of opinion
--- can hold much in common

Write and publish
- premium quality educational resources
-- in downloadable e-book and video formats, and
-- physical books

Run free online xxx xxx ...frequent ‘in person’

- if so the time is rip-ripe to ask ethical funders to fund it for its totally unique competency - if only it can produce the module to educate the whole hierarchy governing the guidance and evaluation of ethical heath research in our particular - most oddly schismatic - splintered field, too :

I think maybe a Parallel Histories module on ME / CFS is also perfect for all the fields of the UK, all in need of it so extensive was the designated splintering, and it would be freely available on the word-wide web (I've not checked their existing module thumbnails but it looks free)

If so the time is rip-ripe to put our very Health, Education and Employment Ministers into the UK Delivery huddle that comes out cudddling (us) unmuddling and puddling in a rush to put the money where the mouth is :

into the UK Delivery Plan for ME/CFS

So I will link it here when I find the place to post the next arm of this type of Parallel Histories service eg to reach from the top down to and through our ethical nurseries, schools, adult education, higher education, medical training, clinics, social services (community care), safeguarding, paramedics, police, courts, prisons, landlords, farms, all emergency services, long list so please finish it, sometime, all fields need scientifically validated ethical criteria in case of encountering ME/CFS and its slang

Oh I forgot the Delivery Plan has a Research arm too, so it CAN fund Parallel Histories for production of the ME/CFS module (with free online xxx xxx and presence) to so vastly edify the whole field of ethics guidance - in health-research evaluation - it shall be wholly relieved of its tormenting, unsubstantiated, vile and obstructive, cognitive dissonance and so shall we, and the whole public may participate. This is the neutral mission of Parallel Histories, because all agree that cognitive dissonance is not good
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*Nordic
good news
more good news

EDIT : to replace lost attachment... and move a comma
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