biomedical research in an increasingly digital world
Transcript of biomedical research in an increasingly digital world
brian m. bot | sage bionetworks | @BrianMBot
department of defense breast cancer research program vision setting meeting 2015
biomedical research in an increasingly digital world
6%
21%
8%
11%
54%cannot reproduce
can reproduce in principle
can reproduce w/discrepancies
can reproduce from processed data w/discrepancies
can reproduce partially
the status quo tolerates poor communication of findings
Ioannidis A. et al. Nature Genetics 2009
“Scientists often study the past as obsessively as historians because few
other professions depend so acutely on it. Every experiment is a conversation with
a prior experiment, every new theory a refutation of the old”
-Siddhartha Mukherjee, The Emperor of All Maladies
scientific method1. define a question
2. gather information and resources (background research)
3. form a hypothesis
8. retest (frequently done by other scientists)
4. test hypothesis experimentally
5. analyze experimental data
7. publish results
6. draw conclusions based on data
sage bionetworks
a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons
focused on a world where biomedical research will fundamentally change to be more open and collaborative
supports communities of researchers working collaboratively across disciplines
sage bionetworks
focused on a world where biomedical research will fundamentally change to be more open and collaborative
focused on a world where biomedical research will fundamentally change to be more open and collaborative
open
sage bionetworks
open access
focused on a world where biomedical research will fundamentally change to be more open and collaborative
sage bionetworks
accessibility
focused on a world where biomedical research will fundamentally change to be more open and collaborative
sage bionetworks
open access
focused on a world where biomedical research will fundamentally change to be more open and collaborative
sage bionetworks
open science
focused on a world where biomedical research will fundamentally change to be more open and collaborative
sage bionetworks
science
focused on a world where biomedical research will fundamentally change to be more open and collaborative
sage bionetworks
a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons
focused on a world where biomedical research will fundamentally change to be more open and collaborative
supports communities of researchers working collaboratively across disciplines
sage bionetworks
a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons
tool for collaborative
science
re-imagined informed consent
patients as
partners
sage bionetworks
a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons
enables sharing of all resources (data, code, results) and their relationships to one another
provides mechanism to communicate in real time instead of only at time of publication
supports open scientific collaborations for clear, reproducible science
sage bionetworks
a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons
enables sharing of all resources (data, code, results) and their relationships to one another
sage bionetworks
tool for collaborative
science
re-imagined informed consent
patients as
partners
a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons
sage bionetworks
“biomedical research needs to empower patients with the voice and the tools they need to manage their health, understand their disease and partner in research”
a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons
sage bionetworks
patients as partners
a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons
sage bionetworks
“participants will be provided real-time graphical representations of their data, access to their own data at
will (to provide to healthcare professionals, donate to other studies, etc.), and also research notifications when new
insights are available”
sharing two ways
a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons
sage bionetworks
tool for collaborative
science
re-imagined informed consent
patients as
partners
a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons
sage bionetworks
a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons
written by a doctor reviewed by a lawyer edited by a committee
sage bionetworks
a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons
interaction design prioritizes the user and the experience
patient-centered consent (pcc) toolkit
sage bionetworks
a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons
deploy consent as a process via mobile, web
patient-centered consent (pcc) toolkit
sage bionetworks
a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons
assist informedness for complex documents
patient-centered consent (pcc) toolkit
sage bionetworks
a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons
nouns and verbs
patient-centered consent (pcc) toolkit
sage bionetworks
a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons
sentences via animation
patient-centered consent (pcc) toolkit
sage bionetworks
sage bionetworks
metadata&
survey&
sensor&tasks&
wearables&
Consent&Toolkit&
Bridge&Server&
Synapse&
Stores&study&data&Assigns&study&code&De<iden=fies&&Syndicates&
Consent&Data&capture&No=fica=ons&
Study<specific&folder&Auto<deposit&aAer&embargo&period&Authorized&users&
a non-profit organization which pilots a variety of components that are necessary to build a scientific research commons
focused on a world where biomedical research will fundamentally change to be more open and collaborative
supports communities of researchers working collaboratively across disciplines
sage bionetworks
supports communities of researchers working collaboratively across disciplines
end game is not collaboration
“systematic exploration of the entire spectrum of genomic changes involved in
more than 20 types of human cancer”
18NPG papers
68core projects248
researchers
28institutions
1070datasets1723
results
TCGA Pan-Cancer Consortium
public / private partnership between NIH, 10 biopharmaceutical companies
and several non-profit organizations
Accelerating Medicines Partnership
Accelerating Medicines Partnership
($ Millions) Total Project Total NIH Total
IndustryAlzheimer’s
Disease 129.5 67.6 61.9
Type 2 Diabetes 58.4 30.4 28
Rheumatoid Arthritis 41.6 20.9 20.7
TOTAL 229.5 118.9 110.6
Accelerating Medicines Partnership
Target Discovery
Target Discovery
Target Discovery
Target Discovery
Target Validation
Target Validation
Target Validation
Target Validation
Shared Information for
Target Identification
coordinate sharing of early-phase target identification insights
department of defense breast cancer research program vision setting meeting 2015
brian m. bot ——————
[email protected] @BrianMBot
sage bionetworks
biomedical research in an increasingly digital world