[CODATA-international] Looking for examples of competitors collaborating in data sharing?

Karmela Krleza-Jeric krlezajk at hotmail.com
Thu Nov 7 16:45:47 EST 2019

Hi Kalpana, hello George,

Indeed, Vivli and several others -such as Clinical Study Data request consortium.  We presented few of them (we call them initiatives) in the Cochrane and GESI webinar about the Access to clinical trial data, IMPACT Observatory and related privacy issues.

Here are links:



Let me also point to the publication in which we described the IMPACT Observatory, its idea and methodology as well as some findings: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5082220/

You night remember the study as I presented it at COST in Split. The Observatory aims at assessing dynamics of the opening of clinical trial data; who is doing what, including interactions of various players. Players include platforms, consortia, and similar data sharing initiatives.

I'd be happy to talk about it (skype?).




Karmela Krleza-Jeric, MD., M.Sc., D.Sc.

Ottawa Group-IMPACT


skype: karmelakj

From: CODATA-international <codata-international-bounces at lists.codata.org> on behalf of George Alter <altergc at umich.edu>
Sent: November 6, 2019 2:18 AM
To: Kalpana Shankar <kalpana.shankar at ucd.ie>
Cc: CODATA International <codata-international at lists.codata.org>
Subject: Re: [CODATA-international] Looking for examples of competitors collaborating in data sharing?

Hi Kalpana,

Take a look at Vivli (https://vivli.org/).  Vivli is a platform for sharing clinical research data with support from pharmaceutical companies as well as academic institutions.  The companies see the benefit of sharing their own data so that they can see data from others, and they helped pay for the platform.

George Alter
Research Professor, ICPSR
Professor of History, University of Michigan
PO Box 1248, Ann Arbor, MI 48106-1248
Tel: 734-478-0783    Fax: 734-647-8200
Email: altergc at umich.edu<mailto:altergc at umich.edu>

On Wed, Nov 6, 2019 at 1:07 AM Kalpana Shankar <kalpana.shankar at ucd.ie<mailto:kalpana.shankar at ucd.ie>> wrote:
Dear colleagues:

For a project I'm working on, I'm looking for examples of competitors (private or public sector) who collaborated to develop an infrastructure for data sharing and actually, well, shared data. Does anyone have any examples to point me to?



Kalpana Shankar
Professor, School of Information and Communication Studies
Fellow, UCD Geary Institute for Public Policy
University College Dublin
Belfield 4

kalpana.shankar at ucd.ie<mailto:kalpana.shankar at ucd.ie>
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