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How can crowdsourcing improve, or potentially hinder, patient outcomes? @daniellejonesMD shares her thoughts: http://bit.ly/2sJrDQN

2017

Crowdsourcing Our Health

The ability to data share via internet groups and apps holds potential to be an incredible advancement in the future of medical treatment, research and health tracking. “Crowdsourcing” is already proving to be a relevant hot topic in the health world. But how can crowdsourcing improve, or potentially hinder, patient outcomes?

Sites like startup CureTogether, recently acquired by genetic big shot 23andMe, have already started crowdsourcing medical data to give us more information on what works (and doesn’t work) for treating chronic conditions. By gathering info from patients about treatment they’ve tried, CureTogether aims to help direct others to the most useful treatments.

Aggregating data direct from patients is rich with possibility. The ability to learn about health information, treatment failures and success stories quickly is clearly attractive. Not to be overlooked is the obvious and inherent bias this type of self-reported data brings with it. There is no way to ensure validity of data obtained via crowdsourcing, and the selection bias it invites is obvious even to those of us who didn’t get an A+ in health statistics. Despite obvious imperfections, crowdsourced health data is still useful, even if just to help us focus on areas that deserve more research.

Another site, CrowdMed, invited crowdsourced data in an entirely different realm of medicine – diagnosis. This site, founded in 2012, has been focused on inviting large groups of people – with no background in medicine required – to help people with chronic undiagnosed ailments find an answer as to what their mystery ailment is. Significant criticism has been aimed at the site due to minimal moderation of responses, which do frequently seem to border on medical advice and are occasionally sparse for evidence/safety info. Although the idea is to offer ideas for the patient to discuss with their physician, there is really no limit on the amount of advice which can be provided, including treatment recommendations. It’s a potentially slippery slope, but an interesting idea, no doubt.

The face of health care is changing quickly, and crowdsourcing will undoubtedly play a role in the future of medicine and medical research. Proceeding with caution and identifying gaps in safety and validity will be of utmost importance as we work to introduce medicine to the incredible potential of our interconnected internet world. However, recognizing the rich possibility the ability to “poll the crowd” provides is important in allowing us to help this data collection gold mine translate into improved outcomes for our patients.

 

American Resident Project fellows receive compensation from Anthem for sharing their perspectives on this blog. Fellows views are their own and do not necessarily reflect the views of Anthem, Inc.