Wefocusonaworldwherebiomedicalresearchisabouttofundamentallychange.Wethinkitwillbeo8enconductedinanopen,collabora1vewaywhereteamsofteamsfarbeyondthecurrentguildsofexpertswillcontributetomakingbe9er,faster,relevantdiscoveries

helping data users work together, when they don’t work together.

Selected Hosted Consortia and Projects

DREAM challenges

NIH-Alzheimers Accelerating Medicines Partnership

Common Mind NIMH Consortium

TCGA Pan-Cancer Consortium

Colorectal Cancer Subtyping Consortium

1.

mobile brings prediction, massive sample sizes, machine learning.

the right to combine and mine…

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

To predict whether or not we’ll click on ads, Facebook / Amazon / Google use sample sizes in the hundreds of thousands.

“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…”

data scale requires different approaches to hypothesis formation.

includes timing of medications

includes timing of medications

individual progression

high-dimensional data

62yoldMan 67yoldWoman

same medicine, different impacts

“loads and reliefs” affect the efficacy of medication

the big payoff comes from recombining studies…

which means no security via withholding.

radical honesty > radical restrictions

informed consent is the key.

2.

how can we increase informedness in mobile or

digital consent?

(not informed consent)

comprehension language time format

regulatory liability

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

initial metaphor

mPower (Parkinsons Disease)

Share the Journey (Breast Cancer Survivor)

30

31

study “narrative”

screen structure

navigation to/from reinforces concept

changeable by participant

>70,000 enrolled since 9 March

(~75% choose to share broadly)

“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.

iconographic representations of key concepts in informed consent

open source methods

design layouts

workflows

web templates and assets

reduce, reuse, recycle!

3.

governance beyond consent

changeable by participant

even stock photo sites are confused about qualified users

identity test

oath

what is informedness, and how does it change over time?

is a design illuminating, or obscuring?

drawing eyes to second cheapest

ticket

how to reconcile tech culture and clinical research?

https://xkcd.com/1428/!

where’s the line between hope and hype?

where’s the line between patient engagement and targeting?

thank you http://sagebase.org/ @sagebio @wilbanks