Fwd: how SHRINE appeased IRBs (HIPAA rules)

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

Re: how SHRINE appeased IRBs (HIPAA rules)

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

Re: how SHRINE appeased IRBs (HIPAA rules)

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

Re: how SHRINE appeased IRBs (HIPAA rules)

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