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1. enclosures and openings
| Date post: | 21-May-2015 |
| Category: |
Health & Medicine |
| Upload: | john-wilbanks |
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1.
enclosures and openings
http://genomemedicine.com/content/5/3/27
as much as 84% of the genes in the human genome
http://genomemedicine.com/content/5/3/27
and very little changes, very slowly.
(but if an iPhone bends, we are ON IT)
2. !
a new methodology for research
not just solo labs, but communities.
TCGA Pan-Cancer Consortium
TCGA Pan-Cancer Consortium
TCGA Pan-Cancer Consortium
TCGA Pan-Cancer Consortium
TCGA Pan-Cancer Consortium
doi:10.7303/syn1710680.4
TCGA Pan-Cancer Consortium
18NPG papers
68core projects248
researchers
28institutions
1070datasets1723
results
TCGA Pan-Cancer Consortium
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groups datasets subtypes
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A
B
C
D
E
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G ...
not just solo labs, but challenges.
accuracy of model jumped three orders of magnitude in nine days.
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76% accurate.
generated an entire suite of available math models attacking
the problem.
21 february 2013
17 april 2013
ongoing...
SHOW ME THE CODE!
...
(all code is free as in beer and as in freedom)
!
http://synapse.org
https://github.com/Sage-Bionetworks/Synapse-Repository-
Services
not just solo labs, but the general public.
how do we scale engagement when our systems weren’t
built for it?
3. !
informed consent as vector for scaling engagement
written by a doctor edited by a lawyer re-edited by a committee
presented to a participant for zero-sum game
written by a doctor edited by a lawyer re-edited by a committee
presented to a participant for zero-sum game
comprehension language time format
regulatory issues liability fears
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key insights: !
make the interface visual !
bring the experience into the consent process itself
1. initial metaphor
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2. initial design
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3. second revision
implementation in 2 Sage Bionetworks clinical studies (parkinsons,
post-chemo cognition)
user interface to consent
informed consent document
IRB
map between form and interface
reviews for ethical and scientific propriety
reviews for effectiveness in informing
mobile clinical study protocoluse standard, vetted interface
and open source software code for consent
write locally appropriate consent forms
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4. PD mobile study (IRB approved)
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4. !
the participant-centered consent toolkit
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PCC Visual Language PCC consent workflows Sample clinical documents Implementation support
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everything needed to create visual consent interfaces…
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only requirement is attribution.
Release Strategy !
• article in E-GEMS methods journal
• website with open source tools (attribution licenses) !
• apps implementing
• pre-committed beta testers
• public presentations through autumn
• social media promotion !
• liase with PRIM&R and others to smooth review of protocols using toolkit
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technical architecture for open science
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(the price is freedom)
this is not an abstract thing, this open science.
“our competitors' reliance on public databases with high VUS and error
rates will further restrict patient access to this life-saving medicine.”
open systems allow for evolution, for experimentation,
for adaptation.
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no company could have built it.
don’t we deserve that kind of freedom to
“make” in health care?
