nih citizen science working group

1. science is exiting the control

of the guild of experts.

“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…”

investigator-centered infrequent data

small sample size

(this is what passes for the gold standard)

if your clinical study can fit in this church, it’s probably not representative…for any meaning of

“representative”

689,003 people

active patients feel the system is failing them,

and are looking elsewhere.

http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html

2.

informed consent for studies at internet scale.

from 1800 to 100,000

1. series of interviews and requirements gathering

2. interaction design process and prototyping

3. consent development

courtesy of: David Fore

gait balance voice tapping

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

64,926 enrolled since 9 March

(across 5 study apps using the method)

changeable by participant

70% choose to share broadly.

28

technical architecture for clinical apps

evaluation criteria*:

are you capable of running a serious study? do you understand the ethics?

can you build a solid app? can you analyze? will you share?

will you give back to participants?

* this is all in addition to IRB review

3.

it’s a method, not a product.

iconographic representations of key concepts in informed consent

“nouns and verbs”

http://sagebase.org/pcc

“sentences”

“separating your identity from your data”

design layouts

workflows

web templates and assets

2015 tasks:

- multi-stakeholder data sharing process development - new modules for e-consent - connection with biobanks

consent isn’t standalone. it connects to ethics and governance structures inside the technical architectures - and back.

thank you

http://sagebase.org/

@sagebio

@wilbanks