participant-centered design for precision medicine research
TRANSCRIPT
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Promote OPEN SYSTEMS, INCENTIVES, and NORMS to redefine how complex biological data is GATHERED,
SHARED, AND USED.
Sage Bionetworks
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METHODS are often de-prioritized in the search for RESULTS.
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“While interaction design has an interest in form (similar to other design fields), its main area of focus rests on behavior.”
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http://stripgenerator.com/strip/982042/starting-a-design-project/view/all/
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1.
the technology wave means we’re going to have to deal with people as…well, people.
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“Investigators will meet annually in-person with each participant to assess and record progression … every six months, the team
will conduct phone and mail surveys regarding diagnosis, medications, and other
impacts of the disease…”
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data generation
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high-dimensional data
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62 y old Man 67 y old Woman
same medicine, different impacts
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tapping number shows effects of medicationand daily variation
50
75
100
125
150
date
y
−1.0
−0.5
0.0
0.5
1.0sign(delta)
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sharing personal
thoughts on day-to-day changes
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“why isn’t this app as nice as spotify”
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2.
issues and opportunities in e-consent
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how do we avoid the consent traps of consumer technology?
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comprehensionlanguagetimeformat
regulatoryliability
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“interface layer”
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study “narrative”
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externality: lousy clinical protocols will be
exposed as lousy clinical protocols.
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3.
designing governance beyond consent
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identity test
data use statement
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I WILL CREDIT PARTICIPANTS
To complete this form: 1. Enter your name (see *) 2. Mark your initials on the line in the upper right corner of each box (9 times, total) 3. Sign and date
I, _____________________*, reaffirm my commitment to the Synapse Awareness and Ethics Pledge. I will adhere to the
following principles for responsible research:
__________________________ * Printed name __________________________ Signature __________________________ Date
I WILL NOT RE-IDENTIFY
___
I WILL NOT SHARE
___
I WILL NOT USE FOR ADVERTISING
___
I WILL KEEP SECURE
___ ___
I WILL PUBLISH OPEN ACCESS
___
___
I WILL PROTECT PRIVACY
I WILL REPORT ANY BREACHES
___ ___
I WILL FOLLOW THE LAW
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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
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iconographic representations of key concepts in informed consent
governance via sharing
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design layouts
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web templates and assets
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100,000+ enrolled in Sage-supported studies since March 2015
Phase I-III studies launched with partners
26 more known studies using methods
integrated into Apple ResearchKit
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4.
where is this all going?
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Kate Crawford, AINow Founder
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DNA sequencing and results return are different from sensors and surveys - have
to teach and assess higher risk, uncertainty, unknowables…
Identifiability Knowable harms Unknown unknowns
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