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Citizen Science: Building REALLY Large Teams to Get Research Done Richard J. Bookman, PhD [email protected] @rbookman Oct 8, 2014 UM CTSI Seminar Series or <…with apologies to Pirandello…> 8 short stories in search of authority

Univ of Miami CTSI: Citizen science seminar; Oct 2014

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The University of Miami's Clinical & Translational Science Institute runs a seminar course for MS students. This talk surveys 8 citizen science projects, reviews NIH's current activities, and identifies issues for attention, particularly with ethical, legal and social implications.

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Page 1: Univ of Miami CTSI: Citizen science seminar; Oct 2014

Citizen Science: Building REALLY Large Teams to Get Research Done

Richard J. Bookman, [email protected]

@rbookman

Oct 8, 2014UM CTSI Seminar Series

or<…with apologies to Pirandello…>

8 short stories in search of authority

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<talk>

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<intro>

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ATLAS team at the LHC/CERN

http://particularphysics.tumblr.com/day/2012/08/31

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in the beginning…

…there was nothing but citizen science.

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http://www.theshirtdudes.com/trust-scientist.html

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Science is the belief in the ignorance of experts.

Richard Feynman,“What is Science?”, address to science teachers, 1966

http://img.youtube.com/vi/_ah7f-1M2Sg/hqdefault.jpg

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Crowdsourcing is not new

“The greatest improvements…have been the effects of the division of labor.”Adam Smith, Wealth of Nations, 1776

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Cognitive surplus

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</intro>

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<stories>

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<1>

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</1><2>

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http://blog.galaxyzoo.org/2013/02/22/green-valley-the-town-too-good-to-di/

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http://spaceinfo.com.au/2010/09/16/puzzle-of-the-green-pea-galaxies/

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</2><3>

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• Is it citizen science?

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</3><4>

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</4><5>

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</5><6>

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</6><7>

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And what if the science is about citizen health?

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http://www.patientslikeme.com/about

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http://www.pnas.org/content/105/6/2052

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Methods

http://www.pnas.org/content/105/6/2052

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Wicks et al., Nat Biotech, 29(5);p411.

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http://www.nature.com/nbt/journal/v29/n5/full/nbt.1837.html

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Abstract

Patients with serious diseases may experiment with drugsthat have not received regulatory approval. Online patient communities structured around quantitative outcome datahave the potential to provide an observational environmentto monitor such drug usage and its consequences. Herewe describe an analysis of data reported on the website PatientsLikeMe by patients with amyotrophic lateral sclerosis (ALS) who experimented with lithium carbonate treatment.To reduce potential bias owing to lack of randomization, we developed an algorithm to match 149 treated patients to multiple controls (447 total) based on the progression of their disease course. At 12 months after treatment, we found no effect of lithium on disease progression. Although observational studies using unblinded data are not a substitute for double- blind randomized control trials, this study reached the same conclusion as subsequent randomized trials,

http://www.nature.com/nbt/journal/v29/n5/pdf/nbt.1837.pdf

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And what if the science is about citizen health?

“What I’ve found to be most amazing about these forums thus far is the ability of patients to identify common side effects, formulate solutions, test them, and confirm their general efficacy all in a matter of days, when it would take researchers weeks or even months to generate the same knowledge.”—Patient with ALS discussing potential treatments on the forum of the ALS Therapy Development Institute

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</7><8>

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</8></stories>

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<show $>

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NIH’s View

https://imagebank.nih.gov/details.cfm?imageid=1335

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http://dpcpsi.nih.gov/sites/default/files/Citizen_Science_presentation_to_CoC_Jan31.pdf

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http://dpcpsi.nih.gov/sites/default/files/Citizen_Science_presentation_to_CoC_Jan31.pdf

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</show $>

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<issues>

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what is citizen science?

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What do citizen scientists do?

Collect dataDonate samples (dna, µbiome)Analyze dataSolve puzzlesAsk questionsFormulate hypothesesBuild toolsWriteSocialize

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How does citizen science work?

Standalone appPlatform-basedGamingChallenges/competitionsSolo &/or teamsSocial networks/build community

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Quality

Reproducibility

Credit/Attribution

Identity/Privacy

Retention

Capacity

Emerging Issues in Citizen Science

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…and then there’s this:

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http://www.csmonitor.com/Business/The-Adam-Smith-Institute-Blog/2011/0131/Forget-fair-trade-buy-from-sweatshops

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Ethical, Legal and Social Implications

• Virtual sweatshop

• IP

• Misrepresentation of task

• Repression 2.0

• Disruptive participants

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Ethical, Legal and Social Implications

Some solutions

• Trusted platforms

• Open algorithms

• Consent to play/participate

• Identity Verification

• Credit or badge system

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</issues>

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How can you use citizen science and

human/machine computation in your

research?

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</talk>

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extras

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https://www.mturk.com/mturk/welcome

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