Governing Personal Data in ResearchKit Mobile Studies - Wireless Health 2015
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Transcript of Governing Personal Data in ResearchKit Mobile Studies - Wireless Health 2015
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Wefocusonaworldwherebiomedicalresearchisabouttofundamentallychange.Wethinkitwillbeo8enconductedinanopen,collabora1vewaywhereteamsofteamsfarbeyondthecurrentguildsofexpertswillcontributetomakingbe9er,faster,relevantdiscoveries
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helping data users work together, when they don’t work together.
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Selected Hosted Consortia and Projects
DREAM challenges
NIH-Alzheimers Accelerating Medicines Partnership
Common Mind NIMH Consortium
TCGA Pan-Cancer Consortium
Colorectal Cancer Subtyping Consortium
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1.
mobile brings prediction, massive sample sizes, machine learning.
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the right to combine and mine…
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To predict whether or not we’ll click on ads, Facebook / Amazon / Google have longitudinal data on individuals.
where i’ve been, where i’m going
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To predict whether or not we’ll click on ads, Facebook / Amazon / Google use sample sizes in the hundreds of thousands.
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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 scale requires different approaches to hypothesis formation.
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includes timing of medications
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includes timing of medications
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individual progression
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high-dimensional data
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62yoldMan 67yoldWoman
same medicine, different impacts
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“loads and reliefs” affect the efficacy of medication
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the big payoff comes from recombining studies…
which means no security via withholding.
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radical honesty > radical restrictions
informed consent is the key.
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2.
how can we increase informedness in mobile or
digital consent?
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(not informed consent)
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comprehension language time format
regulatory liability
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1. tiered information presentation 2. “pictorial” dominant on first information tier 3. text dominant on second information tier
4. require perfect score on short
assessment
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initial metaphor
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mPower (Parkinsons Disease)
Share the Journey (Breast Cancer Survivor)
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30
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31
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study “narrative”
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screen structure
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navigation to/from reinforces concept
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changeable by participant
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>70,000 enrolled since 9 March
(~75% choose to share broadly)
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“participant centric consent toolkit”
http://sagebase.org/pcc
This project was supported by the EDM Forum via grant number U18HS022789 from the Agency for Healthcare Research and Quality. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Agency of Healthcare Research and Quality.
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iconographic representations of key concepts in informed consent
open source methods
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design layouts
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workflows
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web templates and assets
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reduce, reuse, recycle!
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3.
governance beyond consent
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changeable by participant
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even stock photo sites are confused about qualified users
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identity test
oath
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what is informedness, and how does it change over time?
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is a design illuminating, or obscuring?
drawing eyes to second cheapest
ticket
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how to reconcile tech culture and clinical research?
https://xkcd.com/1428/!
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where’s the line between hope and hype?
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where’s the line between patient engagement and targeting?
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thank you http://sagebase.org/ @sagebio @wilbanks