achieving excellence in clinical health - plenary talk
TRANSCRIPT
![Page 1: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/1.jpg)
![Page 2: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/2.jpg)
We focus on a world where biomedical research is about to fundamentally change. We think it will be often conducted in an open, collaborative way where teams of teams far beyond the current guilds of experts will contribute to making better, faster, relevant discoveries
![Page 3: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/3.jpg)
helping data users work together,
when they don’t work together.
![Page 4: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/4.jpg)
TCGA Pan-Cancer Consortium
![Page 5: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/5.jpg)
doi:10.7303/syn1710680.4
TCGA Pan-Cancer Consortium
![Page 6: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/6.jpg)
6
![Page 7: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/7.jpg)
7
A
B
C
D
E
F
1
2
3
4
5
6
groups datasets subtypes
![Page 8: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/8.jpg)
8
A
B
C
D
E
F
1
2
3
4
5
6
G ...
![Page 9: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/9.jpg)
Selected Hosted Consortia and Projects
DREAM challenges
NIH-Alzheimers Accelerating
Medicines Partnership
Common Mind Consortium
Cancer Genome Atlas Pan-
Cancer Consortium
Colorectal Cancer Subtyping
Consortium
![Page 10: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/10.jpg)
1.
machine learning is coming for
research…
![Page 11: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/11.jpg)
a different approach to hypothesis formation…
![Page 12: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/12.jpg)
requires sample scale, longitudinally…
![Page 13: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/13.jpg)
To predict whether or not we’ll click on ads, Facebook /
Amazon / Google use sample sizes in the hundreds of
thousands.
![Page 14: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/14.jpg)
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
![Page 15: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/15.jpg)
689,003 people
![Page 16: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/16.jpg)
![Page 17: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/17.jpg)
![Page 18: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/18.jpg)
from 1800 to 100,000
![Page 19: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/19.jpg)
2.
how can we increase informedness in mobile or digital
consent?
![Page 20: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/20.jpg)
(not informed consent)
![Page 21: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/21.jpg)
comprehension
language
time
format
regulatory
liability
![Page 22: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/22.jpg)
![Page 23: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/23.jpg)
![Page 24: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/24.jpg)
1. series of interviews and requirements gathering
2. interaction design process and prototyping
3. consent development
![Page 25: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/25.jpg)
gait
balance
voice
tapping
![Page 26: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/26.jpg)
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
![Page 27: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/27.jpg)
initial metaphor
![Page 28: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/28.jpg)
28
![Page 29: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/29.jpg)
mPower (Parkinsons Disease)
Share the Journey (Breast Cancer Survivor)
![Page 30: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/30.jpg)
30
![Page 31: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/31.jpg)
31
![Page 32: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/32.jpg)
![Page 33: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/33.jpg)
![Page 34: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/34.jpg)
![Page 35: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/35.jpg)
changeable by participant
![Page 36: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/36.jpg)
>70,000 enrolled since 9 March
(~75% choose to share broadly)
![Page 38: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/38.jpg)
iconographic
representations of
key concepts
in informed
consent
open source methods
![Page 39: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/39.jpg)
design layouts
![Page 40: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/40.jpg)
workflows
![Page 41: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/41.jpg)
web templates and assets
![Page 42: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/42.jpg)
3.
implications for practitioners
![Page 43: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/43.jpg)
is a design illuminating, or obscuring?
drawing eyes to
second cheapest
ticket
![Page 44: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/44.jpg)
how to reconcile tech culture
and clinical research?
![Page 45: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/45.jpg)
where’s the line between hope and hype?
![Page 46: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/46.jpg)
where’s the line between patient engagement and targeting?
![Page 47: Achieving Excellence in Clinical Health - Plenary Talk](https://reader031.vdocuments.net/reader031/viewer/2022030319/58ec94af1a28ab35458b45cd/html5/thumbnails/47.jpg)