3. Definition
⢠âThe practice of obtaining participants,
services, ideas, or content by soliciting
contributions from a large group of people,
especially via the Internet.â
5. Areas of Research
⢠Drug response
⢠Disease research
⢠User experience in crowdsourced studies
⢠Genetic association
6. Why Crowdsourced Studies? Critique of
Traditional Studies
⢠Selection bias
⢠Limited geographies
⢠Surrogate end points
⢠Short-term follow-up
⢠Few comparative studies
⢠COIs
7. Advantages of Crowdsourced Studies
⢠Shortened study time.
⢠Facilitate recruitment of patients with rare
diseases over widely dispersed areas.
⢠Easy availability of control patients.
⢠Lower cost.
⢠Patient engagement (peer group interaction).
8. Critique of Crowdsourced Health Studies
⢠Lack of verification of disease presence,
intervention, or reported data accuracy.
⢠? Capacity of patients to report.
⢠One study: data as good or better than
traditional samples*
⢠Study design: protocol, bias, funding
⢠Regulation and oversight (IRB, consent forms)
*Behrend TS, Sharek DJ, Meade AW, Wiebe EN. The viability of crowdsourcing
for survey research. Behav Res Methods 2011;43(3):800-813.
9. Crowdsourced Health Care Studies:
Classification
⢠Researcher-organized studies
⢠Participant-organized studies
11. PatientsLikeMe
⢠125,000 members
⢠1000+ condition communities
⢠25 published peer review journal articles
23and Me
⢠>100,000 subscribers
Open innovation:
⢠Harvardâs InnoCentive Program.
â NIH-funded study of type I DM.
â Question divorced from answers.
12. PatientsLikeMe: ALS Lithium Study
Accelerated clinical discovery using self-reported patient data
collected online and a patient-matching algorithm. Wicks P,
Vaughan TE, Massagli MP, Heywood J. Nature
Biotechnology 29, 411â414 (2011) doi:10.1038/nbt.1837
⢠Study of effect of Lithium on progression of
ALS.
⢠Study drug had no positive effect on disease.
⢠Landmark trial of crowdsourcing technique.
13. Participant-Organized Studies
⢠Genomics: Genomera, DIY
â Genotyping data
â Blood test results
â Self-reported data
â Survey Questionnaires
⢠Self-tracking:Quantified Self, Curetogether
â Self-tracking data (sensors)
â Self reporting data
15. Crowdsourced Health Studies:
Applications to Pharma
⢠Post-market efficacy and AE surveillance
⢠Comparative studies
⢠Genomic-phenotype efficacy/safety
studies
⢠Medication adherence studies
⢠Marketing efficacy studies
16. Crowdsourced Health Studies:
Applications to Pharma
⢠Improve image of Pharma
⢠Increased patient engagement->
increased adherence
⢠Source of marketing data
⢠Discover genetic/geographic variances in
response to meds
⢠Facilitate personalized medicine
17. âIf you ask me a question I
donât know, Iâm not going to
answer.â