Up at 5AM: The 5AM Solutions Blog

2012 Commons Congress: "Building Better Models of Disease Together"

Posted on Thu, Apr 12, 2012 @ 06:00 AM

Commons Congress5AM is thrilled to be playing a part in the upcoming 2012 Sage Bionetworks Commons Congress in San Francisco, April 20-21. The aim of the Congress is to positively impact the pace at which medical research operates. 5AM was founded with similar goals, principles, and themes, so our participation in the Congress is natural – to speed the path of discovery in disease and treatment of patients requires knowledge, assessment, sharing, and visualization of lots of data, and we believe that software’s a great way to do that. We were happy to work with John Wilbanks (one of Sage’s Directors and a Fellow of the Ewing Marion Kauffman Foundation) on a project that will be unveiled at this year’s Congress: Portable Legal Consent.

Portable Legal Consent will provide a vehicle for patients everywhere to unlock the research potential of their own data. The ultimate goal is to provide infrastructure that cuts through the bureaucracy and obfuscation around gaining access to, and providing access to, data that should already belong to patients. Though complete details on the project will become available during and after the congress, we believe this to be an innovative and useful tool that will have a sweeping impact on how patients can expand the reach and capabilities of research. A slidecast and other information on the PLC project from inception can be found here: http://weconsent.us/

The Participants and Mission

This third year of the invite-only Congress will include scientists, technologists, policy makers, publishers, patient advocates, and key funders, all representing the best and brightest minds in the scientific community. The focus statement of this year’s congress is “Building Better Models of Diseases Together.” With Sage’s track record beginning to result in a quickened pace of progress, expanded patient engagement in treatment and research activities, and disruptive thinking to lead to faster results, the group will consider how to move above, around, and beyond the current medical information system. When you effectively enable and engage a wider community to explore how to achieve research goals, you can increase the pace of progress exponentially.

The Format

The first part of the Congress will focus on Sage efforts in technical and legal data sharing platforms that are beginning to pay off in faster science, increased patient engagement, and disruptive projects that can shake up the entire pharmaceutical industry. The second part will review activities and opportunities in ongoing pilots and projects. The third part will highlight emerging projects designed to shift sharing behaviors in drug development (Arch2POCM) and in disrupting the current medical-industrial social value chain. The concluding part four will be a community effort to look at what is required to move beyond the current medical information system and its rewards.

Wishing You Could Attend?

We don’t blame you—This is some exciting stuff! But the good news is, you can still follow the 2012 Commons Congress in several easy ways:

  • Attend the free live webcast of the 2012 Commons Congress webcast.

  • Follow and contribute to the discussion using the twitter #SageCon hashtag and by following @SageBio.

  • The presentation videos will also be posted on the event site, and on iTunes after the Congress wraps.

  • Presentations and video recordings of the 2011 Commons Congress platform presentations are available on the Sage Bionetworks Commons Congress website

  • Updates on the Communities of Interest workgroups are available on the Sage Bionetworks website.

Be sure to check the 5AM news page after the Congress, detailing our collaborative involvement in development of the portable legal consent tool – as always, your feedback is welcomed!

-Andrew Evans, 5AM Solutions

Tags: informed consent, bioinformatics, sage bionetworks commons congress, portable legal consent, pace of progress


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