San Francisco, 19-20 April 2013

"The Truth of Personalized Medicine: Our Commons Future"

2012 Agenda

“Building Better Models of Disease Together”

-Moving beyond the current medical information system and its rewards


Part I: Redefining Tools Needed to Do Our Work

Starting Point: Stephen Friend, Sage Bionetworks
“Why Can’t We Build Better Models of Disease?”

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George Church, Harvard University
“Personal Genome Project and Beyond”

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Session 1: ”Synapse” as a pilot for building an “information commons” for disease models together.
Leader: Mike Kellen, Sage Bionetworks
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Examination of essential framework and features of the Sage Bionetworks collaborative IT platform “Synapse” to align experts and enthusiasts for the next directions to be taken. This will be followed by a description of next functionalities to be built. Highlights will include: Synapse as way to publicly host data for broad re-use, real time analysis done in Synapse and used to support a journal article. Commentators include: Robert Gentleman, Sean Hill, Jason Johnson, Magali Haas

Background Resources:
About Synapse
Website links:
Synapse Platform

Session 2: Enablement by Governance and Patient Consents

Leaders: Lara Mangravite, Sage Bionetworks & John Wilbanks, Kauffman Foundation
View/Download Video Mangravite Slides Wilbanks Slides
Commentators include: Kelly Edwards, Peter Kapitein, Jane Kaye, Sharon Terry
Patients have traditionally been sidelined in medical research and need to be enabled to become activated partners. The current consent and privacy barriers will be highlighted along with multiple pilot projects to allow patients and scientists to work together in sharing their data. Such opportunities require new governance models for sharing data, tools and disease models.

Background Resources:
Synapse Governance
Synapse Description
Portable Legal Consent
Citizen-Centric Initiatives
Website links:
Synapse Platform
We Consent

Working Session with Breakout Groups
Report Outs

David Haussler, UCSC
“Personal Cancer Genomics”

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Part II: Redefining How We Share / How We Work Together

Session 3: Sage Bionetworks Research
Leaders: Jonathan Derry, Sage Bionetworks &  Adam Margolin, Sage Bionetworks
View/Download Video Derry Slides Margolin Slides
Highlights from the past year of success in building “networked” models of diseases to stimulate discussions on potential projects for next year.

Background Resources:
IOM Precision Medicine Report
Cell Line Encyclopedia
Chemical Genomics
Website links:
CommonMind Consortium

Session 4: The Federation – A Pilot in Building a Shared Collaboration Space
Leaders: Justin Guinney, Sage Bionetworks, Greg Hannum, UCSD & Adam Margolin, Sage Bionetworks
View/Download Video Guinney Slides Hannum Slides
Exploration of the technology and cultural challenges along with benefits that have arisen in the first Federation project where five labs have chosen to share their data, models, and algorithms on three projects related to cancer and aging.

Session 5: Citizen Led Collaborative Competitions
Leaders: Adam Margolin, Sage Bionetworks
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Commentators to include: Regis Kelly, Dan Gallahan, Henry Chesbrough, Ilya Kupershmidt
Citizens need to be directly involved in networked approaches to solving biological problems such as finding the causes of disease, discovering new therapies and identifying who should be given which drug. Citizen science requires new modes of communication and collaboration that go beyond traditional paradigms. It also requires nontraditional funding strategies. This session will detail existing and emerging collaborative ‘challenge projects’ being developed by Sage Bionetworks, METABRIC, Norway Radium Hospital, IBM, and Google.

Working Session with Breakout Groups
Report Outs

Session 6: Open Network Biology
Leaders: Eric Schadt, Mount Sinai School of Medicine & Erich Huang, Sage Bionetworks
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The editor-in-chief of ONB, a new journal with an emphasis on new science and the hosting of “reproducible models”, will review this disruptive alternative to traditional approaches to publishing data, models, and tools.

Session 7: Opportunities for Sharing Data
Leader: Vicki Seyfert-Margolis, Food and Drug Administration
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Update on the role of the FDA to build large public disease biology-based clinical and genomic datasets. Approaches will be presented to extend beyond the 2011 pilot project of accessing the “clinical trial comparator arms” of industry clinical trials (CTCAP) and will examine new joint opportunities in regulatory sciences.

Larry Lessig, Harvard University
“Ingredients for innovation”

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Session 8: Congress Unplugged!
6 minute talks on open science innovation and passion. Speakers include: Bas Bloem, Parkinson Net ”Research 2.0”  Francois Taddei, INSERM Paris “Open Science”  Geoffrey Clapp, Rock Health “Telehealth Legislation and Internet Scale” Aled Edwards, The Structural Genetics Consortium   Heather Joseph, SPARC “Set the Default to Open” Hugo Campos, Amazon “Getting health data from inside my body: what’s next?”  Iya Khalil, GNS “Beyond My Genome to Better Health” John Schrom, Rock Health “Is it bad that I get all of my medical advice from reddit?” Francois Grey, CERN “Who Needs Experts: less talk more thinking”  Joseph Hellerstein, Google “Science in the Cloud” Larry Hunter, U. Colorado “Analytics Without Endpoints: Predicting Disease Trajectories”  Kathy Giusti, Multiple Myeloma Research Foundation “Power to the Patient” Krishanu Saha, MIT”People in Petri dishes”  Magali Haas, One Mind “Why not Imagine a world where?”  Markus Warmuth, H3 Biomedicine “Translational Pre-Clinical Oncology Consortium”  Misha Angrist, Duke “Genomes for Me and Not for Thee” Phil Bourne, PloS ONE, SDSC “The Story of Meredith”  Susan Love, Susan Love Research Foundation “We are all patients”  Tom Insel, NIH “Lost in Translation? What NIH Can Do.”


Part III: Redefining Our Roles / “Who does what”

Adrien Treuille, Carnegie Mellon University
Recipient of the first Leland Hartwell Award for Innovation in Open Networks

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Session 9: Re-Designing Pre-Competitive Drug Discovery
Moderator: Stephen Friend, Sage Bionetworks
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Cutting edge open solutions to traditionally-siloed drug discovery models: A crash course on Public Private Partnerships and other ways to de-risk therapeutic targets. Among those to be highlighted will be the COMPASS trials, Cinderella Therapeutics, Structural Genomics Consortium, The Discovery Network, Arch2POCM, and the Cancer Commons. Commentator: Barbara Mittleman, Panelists: Huib Vriesendorp, Thea Norman, Kathy Giusti,  Rob Snelders, Marty Tenenbaum

Background Resources:
Arch2POCM in Science Trans Med
Cinderella/Doctor’s Dilemma
Discovery Network
Cancer Commons
Website links:
Structural Genetics Consortium
Cancer Commons

Session 10: “BRIDGE” An IT platform to democratize medical research by bringing citizens, funders, and collaborators together into dynamic roles
Leader: Chitra Krishnan, Ashoka with Michael Simpson & Tyler Jenks
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Current reward structures in the medical industrial complex marginalize citizens and patients. We need new ways to bring together citizens, patients, funders, and scientists. BRIDGE is a new approach pioneered by Ashoka/Sage Bionetworks to facilitate non-traditional support of innovative medical research. Commentators include: Jamie Heywood, Bas Bloem, Bev Mayhew, Eva Guinan, Vessela Kristensen, Laura Van’t Veer

Background Resources:
BRIDGE narrative
BRIDGE Project Description
Website links:
Rick Klausner, The Column Group
“New Models for Open Innovation and the Crisis of Translation”
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Jamie Heywood, Patients Like Me
“Discovery 2.0 - I don’t know how to solve this problem but we might”
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Part IV: Redefining How We Build Better Maps of Disease

Session 11: Next Steps

Leaders: Stephen Friend, Sage Bionetworks & John Wilbanks, Kauffman Foundation/Sage Bionetworks
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Following the theme “Building Better Models of Diseases Together”, the Congress has been organized to discuss redefining tools needed, how we share and our roles as researchers citizens and funders. It will provide participants with an understanding of current efforts to build better maps of disease together. The last session entitled “Next Steps” is a workshop where participants will gather in subgroups to focus on the projects and components and to ask what opportunities are worth resourcing to promote sustainability.

In the spirit of the “Continental Congress in Philadelphia” these groups will use the time to shape the strategy and directions of project execution, mechanisms for outreach, and policy change needed for a systems change that will enable networked approaches to building better models of diseases. While last year’s focus was on individual commitments, the goal of the final session is to build a roadmap of how to collectively overcome the weaknesses and gaps in our current and adjacent complementary efforts and to anticipate what is needed to build a Commons where activated citizens can jointly contribute as patients, as funders and as researchers – a democratization of medicine.

View/Download Video of Breakout Group Reports


Table 1- Pushing back on Current Pre-Competitive Boundaries
Moderator: Tony Ford-Hutchinson
Anchors: Tim Behrens, Marcy MacDonald, Barb Mittleman, Bernard Munos, Mike Stocum

Table 2- Shared Collaboration Spaces- IT Platforms- Adjacent Functionalities
Moderator: Tom Insel
Anchors: Sean Hill, Joe Hellerstein, Stephen Larson, Dan Wattendorf

Table 3- Who is the Researcher, Funder, Data Generator: How can we Democratize Medicine?
Moderator: Francois Taddei
Anchors: Greg Biggers, Susan Love, Rob Snelders, Bev Mayhew

Table 4- Tools of Conviviality, Patient Engagement and Consent
Moderator: Kelly Edwards
Anchors: Jane Kaye, Vessela Kristensen, Kris Saha, Lance Stewart, Matthew Todd

Table 5- “Please, just let me build the actual disease models”
Moderator: Marcus Warmuth
Anchors: Doug Bassett, Chris Mason, Alex Pico, Laura vant’Veer, Hito Kitano

Table 6- How can we best enable disease communities to share their data model & tools: “Bridge and Beyond”
Moderator: Bas Bloem
Anchors: Marc Hurlbert, Laxmi Wordham, Marty Tenenbaum, Chitra Krishnan, Nigam Shah

Table 7- Crowd-crafting: Prioritizing Actual Projects & Defining the Supporting Infrastructure
Moderator: Francois Grey
Anchors: Misha Angrist, Dave Clifford, Eva Guinan, Cameron Neylon

Table 8- What about today’s Enablers? Roles for Universities, Funders, Journals
Moderator: Phil Bourne
Anchors:  Kelly LeMarco, Teri Melese, Jessie Tenenbaum, Anders Rosengren, Prescott Woodruff

Table 9-Assuming Patient’s Control their data: Redefining US and EU Roles for Policy, Outreach and Media
Moderator: Sharon Terry
Anchors: Nick Anderson, Brian Athay, Bob Cook-Deegan, David Ewing Duncan

Table 10- Assuming Patients Control their data: Where can the stickiness/virality come from to enable disruptive change?
Moderator: Jason Johnson
Anchors: Maleleh Amini, Maureen Cronin, Magali Haas, Joe Jackson, Wang Jun

Breakout Reports




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