ed, Feb 8, 2012 at 12:02 PM
Subject: Re: how SHRINE appeased IRBs (HIPAA rules)
To: "M. Scott Marshall"
Cc: Sivaram Arabandi , David Booth
, Eric Prud'hommeaux ,
"public-semweb-lifesci@w3.org"
Thanks for the comments - and I'm happy to chat about the PLC work. We
are
Thanks Eric, David, Sivaram,
[CC'd John Wilbanks]
Good stuff! The 'Consent to Research' work is essential to progress
toward clarity and transparency in an area of (global) uncertainty:
patient data use. I think that John Wilbanks/Sage BioNetworks[1] are
doing great work. I understood from John th
Thanks Eric, this is good stuff - something that all of us that have
dealt with IRB have experienced. Especially painful when multiple
institutions were involved and often needed multiple data sharing
agreements to be put in place.
As if this was not enough, if the initial aggregate results were f
This is an excellent illustration of how damaging HIPAA is to research
efforts, and how important it will be to develop *standard* ways to
conform to HIPAA requirements and make research data more usable.
For example, instead of every hospital or research project creating its
own custom consent