The most valuable application of UMA in the research community has to do with re-consenting for additional uses of data at a later point in time. By allowing the research subject to specify their UMA Authorization Server the first time they are recruited into any study, they will then have established a point-of-contact for consent to further uses of their data as well as a means for the patient to update, via metadata directories linked to their authorization server, the availability of additional data sources over time. 

Using UMA to create a patient-centered rather than an institution-centered architecture reduces the delay and the cost of hospitals and other data broker intermediaries at every phase of research from hypothesis generation, to recruitment, through clinical trials, and regulatory approval to post-market surveillance. Site-free trials become practical further reducing time-to-market.

Adrian

On Mon, May 13, 2019 at 5:54 PM Colin Wallis Kantara <colin@kantarainitiative.org> wrote:
Folks

Can we help Philip with this request? 

Kind regards

Colin
 
---------- Forwarded message ---------
From: Philip Kershaw - UKRI STFC <philip.kershaw@stfc.ac.uk>
Date: Mon, May 13, 2019 at 3:29 PM
Subject: Information about User-Managed Access (UMA)
To: federatedIdentity-members ( federated identity system for scientific collaboration) <federatedIdentity-members@cern.ch>


Hi all,

I’m looking for practical applications of UMA in the research community.  Can anyone provide me any pointers or contacts?

Thanks,
Phil
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Adrian Gropper MD

PROTECT YOUR FUTURE - RESTORE Health Privacy!
HELP us fight for the right to control personal health data.