Scaling Crowdsourced Health Studies: The Emergence of a new form of Contract Research Organization

Abstract

Accessing crowdsourced cohorts for health studies is a significant emerging opportunity that could have a positive impact on public health research, particularly as outcomes shift to the personalized, preventive medicine of the future. Health social networks have grown to become some of the largest aggregate patient registries and offer cost and efficiency benefits for study recruitment and operation by both traditional researchers and citizen scientists. Here, a model is proposed for extending crowdsourced studies beyond small-group experimentation to large-scale intervention-based research studies that are professionally run and scientifically rigorous, in effect creating a new form of contract research organization.

KEYWORDS::

• citizen science
• clinical trials
• crowdsourced health studies
• crowdsourcing
• health research

Acknowledgements

The author would like to acknowledge J Wilbanks for suggestions regarding institutional review board and insurance models, and M Bar-Shir, J Chang, J de Kay and T Pickard for helping with the interviews to define the next generation of professionalized crowdsourced health studies.

Financial & competing interests disclosure

M Swan is the founder of the nonprofit research organization DIYgenomics and an advisor to the personal health collaboration company Genomera. The author has no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.