Clinical Trial Data Rights?
by Susannah Fox on October 29, 2009
“If you expose human beings to an experimental treatment, the public has a fundamental right to see the results of those experiments.” – Steven Nissen, chairman of the cardiology department at the Cleveland Clinic, quoted in The Sunlight Foundation’s account of Bray Patrick-Lake, an e-patient who has left with only questions after a clinical trial ended abruptly.
Comments
3 Responses to “Clinical Trial Data Rights?”
Leave a Reply
Similar Posts
A project of the
white paper
e-Patients:
How They Can Help Us Heal Healthcare
Recent Posts
Recent Comments
- DrRon on E-patients, Cyberchondriacs, and Why We Should Stop Calling Names
- Susannah Fox on E-patients, Cyberchondriacs, and Why We Should Stop Calling Names
- Hand Hygiene Saves Lives: video for hospitals to show newly admitted patients | e-Patients.net on “Are You Safe?” patient safety awareness video
- Carlos Rizo on E-patients, Cyberchondriacs, and Why We Should Stop Calling Names
- Carlos Rizo on E-patients, Cyberchondriacs, and Why We Should Stop Calling Names
Links
Categories
- chapter reviews
- demographics
- e-patient stories
- e-pts resources
- ethics
- found on the net
- general
- hc's problem list
- key people
- maternity
- medical records
- net-friendly docs
- news & gossip
- others' e-patient stories
- patient networks
- policy issues
- positive patterns
- pt/doc co-care
- pts as teachers
- reforming hc
- research issues
- trends & principles
- understanding statistics
- Why I joined
- Why PM
Archives
- September 2010
- August 2010
- July 2010
- June 2010
- May 2010
- April 2010
- March 2010
- February 2010
- January 2010
- December 2009
- November 2009
- October 2009
- September 2009
- August 2009
- July 2009
- June 2009
- May 2009
- April 2009
- March 2009
- February 2009
- January 2009
- December 2008
- November 2008
- October 2008
- September 2008
- August 2008
- July 2008
- June 2008
- May 2008
- April 2008
- March 2008
- February 2008
- January 2008
- December 2007
- November 2007
- October 2007
- September 2007
- August 2007
- July 2007
- June 2007
- May 2007
- April 2007
- March 2006
If I read this correctly, not even consent was given?
If so, this is a gotspe.
Clinical Trial Data Rights? | e-Patients.net http://ow.ly/xp0o
The following comment on this post was emailed to me by Ida Sim, MD, PhD, Associate Professor of Medicine and Director, Center for Clinical and Translational Informatics, UCSF. I am posting it with her permission:
I led the WHO’s International Clinical Trials Registry Platform (http://www.who.int/ictrp) in 2005-6, and established global data and policy standards for trial registration to improve the transparency of clinical trial data reporting. That’s still a strong underlying principle of my work – high-quality, open, and useful clinical research of real people in real life to improve health.