Ben Goldacre and systematic hiding of... - Understanding Cli...
Ben Goldacre and systematic hiding of trial data
That was so interesting and somewhat disturbing. Food for thought. Thank you for posting andy.
c
Thank you. I only just came across this issue. Just found alltrials.net/find-out-more... which is a joint venture to try to get ALL trial data published so that doctors and patients can rely proper evidence.
It occurs to me to ask charities whether they should take funding from drug companies that do not support this initiative.
Sounds like a good idea andy but only once all trial data is published , so proper evidence is available.
I would imagine some may be reluctant if they are receiving funding, but of course charities do give out funding to support research too, so that might be mor successful.
Would you object to me putting this link on another illness specific HU site and an illness specific site not connected to HU? I think it is such a good thread of yours and something I had not given any thought to previously. So thank you.
cx
Please copy and paste wherever you wish.
Ben Goldacre - wrote a book in 2006 called Bad Pharma. I figured that all the bad things he said in it way back then regarding "publication bias" and the serious consequences of NOT publishing negative results for MD decision making and patient treatments would have progressed in the intervening years. Apparently not !
One of the effective ways of moving towards the solution of non-reporting of failed Clinical Tests is for those of us who participate in clinical tests to insist on registration and reporting of Trial results broadly to the medical community BEFORE we agree to be participants. EVERYONE considering participation in a Clinical Trial should watch this video (and make their own decision).
I agree, to do trials they require our permission if we take part. If someone could come up with a legal framework to present them with a "I'll take part in this trial" if....
Another way would be a health trial watch website where people involved in trials could register their participation. At a later date if we can engineer a trace back to those registrations then we can close the loop.
Such a service would not need all participants to register, just some. The website owners could then contact the trial organisers to register full details - when the trial is happening.
Eg I was asked to participate in a trial while visiting my rheumatologist. I was given forms, completed a consent form. I could have easily taken pictures of my forms and uploaded them.
