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New James Coyne blog post: What patients should require before consenting to participate in research

Sasha

Fine, thank you
Messages
17,863
Location
UK
James Coyne said:
A bold BMJ editorial calls for more patient involvement in the design, implementation, and interpretation of research – but ends on a sobering note: BMJ has so little such involvement to report.

In this edition of Mind the Brain, I suggest how patients, individually and collectively, can take responsibility for advancing this important initiative themselves.

I write in a context defined by recent events.

  • Government-funded researchers offered inaccurate interpretations of their results [1, 2].
  • An unprecedented number of patients have judged the researchers’ interpretation of their results asharmful to their well-being.
  • The researchers then violated government-supported data sharing policies in refusing to release their data for independent analysis.
  • Patients were vilified in the investigators’ efforts to justify their refusal to release the data.

More here...

http://blogs.plos.org/mindthebrain/...before-consenting-to-participate-in-research/
 
Last edited:

snowathlete

Senior Member
Messages
5,374
Location
UK
Very good, as all of James Coyne's blogs are. He's a good writer and thinker.
I'd love to see mecfs research meet these standards going forward, particularly in the UK where the reliability of such research has been so appalling to date. researchers, funders, and charities all have work to do to build patient trust and that's done by involvement and openness.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Very good, as all of James Coyne's blogs are. He's a good writer and thinker.
I'd love to see mecfs research meet these standards going forward, particularly in the UK where the reliability of such research has been so appalling to date. researchers, funders, and charities all have work to do to build patient trust and that's done by involvement and openness.

Wouldn't it be great if research into our disease became a beacon of what to do, rather than a shameful example of what not to do?
 

worldbackwards

Senior Member
Messages
2,051
Wouldn't it be great if research into our disease became a beacon of what to do, rather than a shameful example of what not to do?
Do you think we'd get nostalgic for the old ways? I can see us all thirty years on, with biomarkers, treatments, treated with a vague degree of respect by doctors, all sat around going "Ah, do you remember the days when they used to call us all terrorists and fake their results? Happy times..."