San Francisco, 19-20 April 2013

"The Truth of Personalized Medicine: Our Commons Future"

Congress Unplugged!

As part of the Commons Congress tradition of Friday evening events that are informative and fun as well as a chance to eat, drink and network, Sage Bionetworks, Rock Health and Ashoka hosted Congress Unplugged! on Friday April 20, 2012.

Congress Unplugged! was a venue for participants to share their passion, new ideas, and inspiring stories on the topic of data sharing and collaborative research. Congress Unplugged! talks are short. Speakers focused on a single unique story and challenged the audience to think big suggesting brilliant solutions as well as warning about impeding doom. Congress Unplugged! talks will be posted on the web shortly after the Congress.  Think “TEDx” talks gone viral!

Congress Unplugged! Speakers:

Getting health data from inside my body: what’s next?
Hugo Campos, ICD User Group
For the past two years, I have been on a quest for access to the data that’s collected from inside my body by a cardiac defibrillator. This data is available to my clinic, but not to me, the patient who originates it. In a world where device manufacturers consider doctors their only customers, what’s it going to take for patients to be empowered with information? [Sage Bionetworks apologizes that due to technical difficulties Hugo Campos's excellent presentation was not recorded.  Please go to the ICD User Group website for details on this initiative]

Research 2.0
Bas Bloem
, Parkinson Net
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I describe how research should transform from its traditional approach – where scientists dictate the research agenda and possess the data – to a new world of ‘Research 2.0’ or ‘participatory research’ where patients define what they feel is clinically most relevant, where patients own their own data, and where scientists collaborate in order to best answer the patients’ questions

The Story of Meredith
Phil Bourne, PloS ONE, SDSC
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Much of science is closed and hierarchical. Occasionally something happens that really drives home how limiting that can be. Such is the story of Meredith. Citizen scientists typically contribute data to be interpreted by the experts. Garage scientists run their own experiments which occasionally make it big (think Apple). Enter “digger scientists” who turn apparent digital trash into treasure

Telehealth Legislation and Internet Scale
Geoffrey Clapp, Rock Health
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Telemedicine has been slow to be adopted at “internet scale,” in many cases due to legislative hurdles and medical licensure. Several legislative changes are currently in progress that will not only make telemedicine more attractive, providing the rocket fuel to the telemedicine, opening up many new revenue sources for doctors and startups in the health/tech space, and better, more cost effective care for patients

Can we be One-minded to cure brain disorders?
Magali Haas, One Mind
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A dive into culture, values and data and other root causes and an exploration of potential solutions toward a lifetime of brain health

People in Petri dishes
Krishanu Saha, MIT
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Embryonic-like stem cells can now be induced from routine blood samples from nearly any person.  These cells grown in Petri dishes may used to model disease in the individual and thus are called a “disease-in-a-dish”.  But has the individual been lost in this categorization?  I will describe how various individuals – researchers, doctors, patients, citizens, donor-participants, and future consumers of personalized medicine – emerge in the research architectures constituting this field

Call for Collaboration and Establishment of Oncology Preclinical Translational Medicine Experimental Platform
Markus Warmuth, H3 Biomedicine
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Lack of access to powerful and expansive experimental platforms and infrastructure essential for oncology target validation and continued hypothesis validation from the drug discovery process and up until clinical trial significantly hinders small or medium size biotechnology companies, research or academic institution’s capability to advance oncology drug discovery. We propose the idea of Translational Pre-Clinical Oncology  (TransPOC) Consortium, which seeks to establish translational infrastructure including experimental platforms and novel technologies for information/data sharing, mining capability and dynamic research/publishing through shared resources

Reading rots the mind
Aled Edwards, Structural Genetics Consortium
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Bibliometric analysis of research activity reveals that most research in academic and industry is focused on 10% of human proteins, despite genetic evidence highlighting disease-related proteins in the “unstudied” 90%.  Even if we succeed in describing disease networks and in uncovering new targets, will the peer-review system allow us to study them?   Is our cherished peer-review system an anachronism?

Analytics Without Endpoints: Predicting Disease Trajectories
Larry Hunter, University of Colorado, Denver
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Traditional analytics need defined outcomes to build predictive models. Theories of reinforcement learning, particularly temporal difference learning, have the potential to help patients use high-frequency phenotyping to manage their disease, maximizing diverse sets of positive events while minimizing negative ones.

Power to the Patient:
the Convergence of Genomics, Technology and Social Networking

Kathy Giusti, Multiple Myeloma Research Foundation
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The emerging technological and digital revolution has had a significant impact on patients’ ability to advance progress toward personalized treatments and cures. I will provide examples of how the Multiple Myeloma Research Foundation is developing and implementing models and programs to leverage these opportunities

Who needs experts:  Less talk more thinking
Francois Grey, CERN
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Like medivial guilds experts require long training and are paid well. Recent crowd sourcing methods have shown an alternative. Is there an oportunity for crowdsourcing parts of the expertise needed to treat patients?

Set the Default to Open
Heather Joseph, SPARC
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There is a growing movement to change the lack of taxpayer’s access to scientific research by supporting policies that require all published results to be made available to the public, free, online as soon as possible. This talk will outline actions you can take to get involved and make taxpayer-funded science openly accessible

Accelerating Translational Science
Tom Insel, NIH
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Translational science relevant to drug discovery has hit a wall.  When we shift our focus from “what science we do” to “how we do science”, several solutions emerge.  Perhaps most critical is the recognition that partnerships built around pre-competitive sharing of compounds, data, and resources can accelerate a key step in translation — target validation.  NIH via its new National Center for Advancing Translational Science (NCATS) can catalyze translation by changing “how we do science”

Genomes for Me and Not for Thee
Misha Angrist, Duke University
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I will discuss two experiences I have had as a member of the Duke IRB, both of which illustrate how far we are from changing the culture of academic research from one based on paternalism, genetic exceptionalism and legal liability to one based on autonomy and partnership. It’s hard to be optimistic sometimes

Beyond My Genome to Better Health
Iya Khalil, GNS Healthcare
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I will talk about how a near fatal bilateral pulmonary embolism has given me a unique perspective on the state of healthcare and what the biomedical community needs to achieve beyond sequencing our genomes to ultimately help the end consumer in this system – the patient

Science in the Cloud
Joseph Hellerstein, Google
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Scientific discovery is in transition from a focus on data collection to an emphasis on analysis and prediction using large scale computation. These computations can be done with unused cycles in commercial Clouds if there is appropriate software support. This talk describes the Google Exacycle system that routinely provides more than 100K cores for scientists doing computation based discovery

Is it bad that I get all of my medical advice from reddit?
John Schrom, Rock Health
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The average 24-year-old will spend more time on Facebook in the next week than they will spend with a physician in the next 20 years. I will provide examples of how our health is expressed through social media, how we can use that to improve lives and fight disease, and why this is the start of a transformational change in public health and medicine

Reinventing learning through research
Francois Taddei, INSERM Paris
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Learning through research is a powerful educational tool that is often limited to students in research universities. Can open science, open technology, and open education converge as a force to democratize and reinvent how learning through research is done? i willl give an example of ways forward that i would like to co-design with the sage community

We are all patients
Susan Love, Susan Love Research Foundation
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All efforts to revolutionize our approach to medical research are based on the same silos of researchers and physicians on one side and patients on the other. The term patient refers to what is usually experienced as a one down position. This is an artificial dichotomy since we are all patients or soon to be patients. This should be a public effort with all of us bringing our expertise to the table to work together to eradicate disease. Sometimes we may be wearing a doctor hat but we also may have a researcher and a patient hat…they really are not different groups. We are all now or soon to be patients!


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