decentralization: a trend in biomedical research

brian m. bot | principal scientist |

2016 sep 28

sage bionetworks

clinical trials transformation initiative

a trend in biomedical research

| @BrianMBot

decentralization:

sage bionetworks

promote open systems, incentives, and norms to redefine how complex biological data is

gathered, shared, and used

our approach

decentralization

sage bionetworks

engage diverse communities of researchersaround biological and analytical problems

too complex for a single institution

our focus

empower citizens to track their own healthand contribute deep phenotypic data to

research topics important to them

decentralization

decentralizationthe process of redistributing or dispersing functions, powers, people, or things away from a central location or authority

wikipedia

pervasiveness of networked information

cloud infrastructure

democratization of research process

gov’t agencies and public pushing for > sharing

decentralization in biomedical research

recruitment

data generation

data analysis

institutional silos

recruitment data generation data analysis

institutional silosbreaking down

crc subtyping consortium

A

B

C

D

E

F

1

2

3

4

5

6

expert team data subtype


A

B

C

D

E

F

1

2

3

4

5

6

...

expert team data subtype


doi:10.1038/nm.3967


analytical challenges

unbiased, consistent, and rigorous method assessment

sampling of a space of diverse methods

predict survival for prostate cancer patients

analytical challenges

public / private partnership between NIH, 10 biopharmaceutical companies

and several non-profit organizations

accelerating medicines partnership

data generation data analysis|

http://www.nytimes.com/2014/02/05/health/nih-joins-drug-makers-and-nonprofits-on-stubborn-diseases.html

($ 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



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-phasetarget identification insights



AMP-AD Collaborative

Workspace

Quarterly Depositions

Broad/RUSH

Mt. Sinai

U Fl/ISB/Mayo

Emory

Sage

Other Partners

Individual Partner Workspaces AMP-AD Data Portal

Consortium Space

Public space

AMP-AD Synapse Project Structure



Healthmobile

Healthm

insular health trackingmove beyond

nearly 200 million smart phone users in US

insular health trackingmove beyond

2015 march

participant-centered consentopen source toolkit

http://sagebase.org/pcc

http://sagebase.org/pcc

participant-centered consent

1. tiered information access by participants

2. ‘pictorial’ dominant on first information tier

3. text dominant on second information tier

4. require perfect score on short assessment

participant-centered consent

changeable by participant

first 6 months

16,585 participants consented

14,684 participants enrolled

9,520 agreed to ‘share broadly’

1,087 self reported PD diagnosis

recruitment

mPower

motor initiation gait/balance hypophonia memory

mPower

data generation

activities

six month data releasemPower

data generation

six month data releasemPowertask name type of task and

scheduleunique

participants unique tasks

demographics survey - once 6,805 6,805

MDS-UPDRS survey - monthly 2,024 2,305

PDQ8 survey - monthly 1,334 1,641

memory activity - t.i.d. 968 8,569

tapping activity - t.i.d. 8,003 78,887

voice activity - t.i.d. 5,826 65,022

walking activity - t.i.d. 3,101 35,410

data generation

Parkinson’s Disease Foundation Eli Lilly AstraZeneca Apple Verily Intel Infocepts Posit Science

MIT The Ohio State University University of Otago University of Texas Health Science Center Istanbul Sehir University University of Iowa University of Virginia University of Toronto Johns Hopkins University Vanderbilt University University of Rochester McGill University Xi'an Jiaotong University University of Washington Harvard University

mHealth research communityParkinson

study data released before any primary publication 60+ independent ‘qualified researchers’ working towards building a PD research community

Sage Bionetworks joins The Scripps Research Institute (TSRI) for PMI Cohort Program via Participant Technology Center (PTC)

2016 July 06

data generation

Sage Bionetworks joins The Scripps Research Institute (TSRI) for PMI Cohort Program via Participant Technology Center (PTC)

In collaboration with Scripps Participant Technologies Center (PTC):

• Sage Bionetworks will be responsible for the patient consent and data governance, as well as the community outreach and participant engagement efforts of the PTC

• Sage Bionetworks will also be engaged in the scientific and engineering work to develop new methodologies for measuring symptoms of health and disease, including developing symptom measurements for phone, wearable, and other sensors

data generation

democratization of research

pervasiveness of networked information

cloud infrastructure

gov’t agencies and public pushing for > sharing

increasingly decentralized research ecosystem

brian m. bot———————— principal scientist community manager sage bionetworks [email protected] @BrianMBot

thank you

mailto:[email protected]