1. Crowd Sourced Health Care Studies:
Implications for Pharma
David Lee Scher, MD, FACC, FHRS
Digitalhealthconsultants.com

2. “The most valuable commodity that I
know of is information”. –Gordon Gekko

3. Definition
• “The practice of obtaining participants,
services, ideas, or content by soliciting
contributions from a large group of people,
especially via the Internet.”

4. Crowdsourced Health Studies
• Convergence of three phenomena:
–Citizen science
–Crowdsourcing
–Health 2.0

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

10. Researcher-Organized Studies
• PatientsLikeMe
–Self-reported data
–Survey questionnaires
–23andME
– Genotyping data
– Survey questionnaires

11. PatientsLikeMe
• 125,000 members
• 1000+ condition communities
• 25 published peer review journal articles
23and Me
• >100,000 subscribers
Open innovation:
• Harvard’s InnoCentive Program.
– NIH-funded study of type I DM.
– 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, 411–414 (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
– Genotyping data
– Blood test results
– Self-reported data
– Survey Questionnaires
• Self-tracking:Quantified Self, Curetogether
– Self-tracking data (sensors)
– Self reporting data

14. Self-Tracking: Curetogether.com
• Symptoms
• Treatments
–Attempted
–Efficacy
–Adverse events/side effects
• Perceived precipitants or causes of
disease
• Comments, observations

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. “If you ask me a question I
don’t know, I’m not going to
answer.”