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/
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