BY RISHI SHAH
Strength in numbers is a cliché for a reason. It’s no wonder that harnessing the potent power of crowds has become so popular, from raising quick cash through crowdfunding websites such as GoFundMe and Kickstarter to expediting travel through rideshare apps like Uber and Lyft.
Now, crowdsourcing has entered the healthcare arena, most notably through a website known as CrowdMed. The premise is straightforward. First, individuals provide any pertinent medical information and complete a short survey detailing their symptomatology. Next, CrowdMed’s legion of “medical detectives,” composed of licensed physicians, medical students, physician assistants, chiropractors, scientists, naturopaths, and healthcare aficionados, analyze and discuss the case before each detective announces their disease verdict to the client. Finally, CrowdMed prepares a diagnosis report for the patient that uses a probability-based algorithm to rank diagnoses based on metrics such as group consensus and the historical success rate of the detectives involved.
The platform boasts remarkable success, with over 75% of patients reporting that their CrowdMed diagnosis was subsequently confirmed by their physician. Moreover, the site claims to have played a role in solving more than 700 of the world’s most perplexing medical cases.
Gone are the days of patients endlessly scouring the annals of WebMD, on a vain quest to find remedies for their mysterious maladies. Take Pablo, for instance: a physician from England who had been suffering from debilitating muscle pain, extreme fatigue, and brain fog for over thirty-four years. Pablo believed himself to be suffering from a chronic illness called myalgic encephalomyelitis, colloquially known as chronic fatigue syndrome, for which there is currently no known cure. However, as Pablo’s condition became increasingly unbearable, he solicited help from CrowdMed to determine if there could be another disease responsible for his pain.
In under two months, a group of fifty medical detectives on CrowdMed discussed and voted on over a dozen different potential diagnoses for Pablo before the site’s algorithm ranked Fibromyalgia, a disease that causes muscle pain and fatigue, as a likely source of his symptoms. Pablo’s doctor confirmed this diagnosis. Equipped with this new knowledge, courtesy of CrowdMed, Pablo immediately started treatment for the illness and soon reported considerable relief from his symptoms. In just two months, Pablo’s thirty-four years of inconclusive suffering were resolved.
CrowdMed offers an efficient and cost-effective solution. The site’s founder, Jared Heyman, reports that the typical CrowdMed patient has been suffering for about eight years, having seen about eight different doctors and racking up more than $60,000 in medical bills. Heyman says he has a personal connection to his site’s mission. Witnessing his sister suffer from an undiagnosed disease for more than three years, despite having seen dozens of doctors and accumulating more than $100,000 in healthcare costs, Heyman was motivated to improve access and quality in the American healthcare system. He created CrowdMed, where the average case turnaround time is sixty days and the most expensive monthly subscription offered is slightly under $250.
Another unfortunate reality of the current American medical establishment is that many patients, especially those belonging to marginalized communities, are gaslighted by their physicians who dismiss their symptoms as being psychosomatic. In such a climate, avenues of care like CrowdMed, which acknowledge and strive to resolve the suffering of all their patients, are arguably essential.
But while CrowdMed enjoys benefits in speed, cost, and inclusivity, the crowdsourcing format of the site has some limitations. For example, not all medical detectives on CrowdMed are licensed doctors; some are everyday people with no formal medical background at all. Further, CrowdMed does not take a medical detective’s credentials into account when ranking the influence of their proposed diagnosis. Instead, CrowdMed awards greater influence to the diagnoses provided by medical detectives who have demonstrated success on the platform in the past. Thus, a client’s highest ranked diagnosis may in fact just be the conclusion of an amateur medical enthusiast.
Another key constraint of CrowdMed is that some of the most qualified minds may be implicitly excluded from participating. Fulfilling the duties of a CrowdMed medical detective is a laborious endeavor, one for which many highly specialized doctors and specialists simply do not have the time. Moreover, CrowdMed utilizes a small monetary incentive system to attract medical detectives to a case, which may not be sufficiently alluring to otherwise employed doctors.
Patients may also be hesitant to provide increasingly personal medical information to a group of strangers, which can pose a barrier to the accuracy of a CrowdMed diagnosis. Moreover, crowdsourcing merely seeks out the opinions of medical detectives without actually examining the patient. People describe their symptoms in vastly different ways and it may be highly difficult to reach a proper diagnosis and treatment plan without physically interacting with and studying a patient.
A larger, more societal hindrance to the success of medical crowdsourcing is the receptivity (or lack thereof) of the medical community. It may be challenging for a doctor who has trained and studied for many years to respect the medical opinions of internet surfers and, even further, admit that their own diagnosis was incorrect. Dr. Jeff Russ, a pediatric-neurology resident, is one such opponent of platforms like CrowdMed. He writes that crowdsourcing relies “on the hope that sufficient quantity will outweigh questionable quality.” While Russ believes that the medical community needs to do a better job at helping patients feel heard and understood, he fiercely rejects medical crowdsourcing as a viable alternative to the current healthcare system. Russ’ arguments again illustrate that the healthcare system in the United States is an individualistic practice, and that ushering in a new age of widespread collaboration may not be met with open arms.
Nonetheless, the merits of crowdsourcing in the correct context are immense, not only in solving medical cases but also in fostering a community that is dedicated to helping patients find fast and inexpensive healthcare solutions. There are about 7,000 rare diseases (defined as a disease that affects fewer than 200,000 Americans) affecting nearly thirty million people in the United States. Speedily and successfully diagnosing individuals who suffer from these diseases remains a significant challenge. In this regard, CrowdMed continues to demonstrate its potential in alleviating unnecessary suffering.
Rishi Shah is a sophomore in Berkeley College. He can be contacted at rishi.shah@yale.edu.
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References
- CrowdMed. “Frequently Asked Questions.” CrowdMed, 2022. https://www.crowdmed.com/faqs
- Yablonsky, T. “Can an online ‘crowd’ diagnose what your doctor can’t?” Chicago Tribune, 19 August 2019. https://www.chicagotribune.com/business/sc-hlth-0506-crowdmed-diagnosis-20150430-story.html
- CrowdMed. “Pablo: The Doctor Who Needed a Diagnosis.” CrowdMed, 2022. https://www.crowdmed.com/our-stories/pablo
- Northwell Health. “Gaslighting in women’s health: No, it’s not just in your head.” Katz Institute for Women’s Health, 2022. https://www.northwell.edu/katz-institute-for-womens-health/articles/gaslighting-in-womens-health
- Digital Innovation and Transformation. “Wisdom of crowds for rare diseases: CrowdMed.” Harvard Digital Initiative, 27 October 2015. https://d3.harvard.edu/platform-digit/submission/wisdom-of-crowds-for-rare-diseases-crowdmed/
- Russ, J. “The dangers of inexpert diagnosis from a noisy crowd.” KevinMD.com, 18 March 2017. https://www.kevinmd.com/2017/03/dangers-inexpert-diagnosis-noisy-crowd.html
- National Institutes of Health. “About GARD.” Genetic and Rare Disease Information Center, 2022. https://rarediseases.info.nih.gov/about
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