Unorthodox approach could one day provide clinical laboratories with new market opportunities to offer patients diagnostic services
Patients turning to the Internet to learn about medical ailments, chronic disease, medical laboratory tests, or pathology treatments is nothing remarkable these days. The Internet has become ubiquitous to patients who are engaged in their own healthcare. However, crowdsourcing medical problems to find probable diagnoses for rare medical conditions is a novel approach that is gaining in popularity.
Crowdsourcing is a relatively new type of project outsourcing. It involves acquiring specialized advice, services, and other contributions from a large group of qualified individuals who provide their work through the Internet from locations all over the globe.
The general idea is that more brains are better than few or one when it comes to completing tricky projects. It was only a matter of time before crowdsourcing discovered healthcare and companies sprang up to provide it as a service to patients with difficult-to-diagnose conditions, and to the physicians who are treating them.
Harnessing the Collective Power of Thousands of Medical Minds
One such company is CrowdMed, a healthcare crowdsourcing platform in San Francisco. CrowdMed harnesses the collective power of thousands of medical professionals (called “detectives”) to help patients find accurate diagnoses for unresolved medical conditions.
“If you have a condition that doctors see often, say a heart condition or cancer or diabetes, it’s not hard to get a diagnosis and get on the right treatment path,” stated CrowdMed Founder and CEO Jared Heyman in an NBC News article. “If the condition is more unusual, you often end up in this cycle where you get referred from specialist to specialist searching for that needle-in-a-haystack person who might have familiarity with what you have.”
Heyman founded CrowdMed in 2013, a decade after his younger sister Carly had experienced a bizarre change that left her gaining 50 pounds and sleeping all day, while fighting off nightmares and suicidal thoughts. According to an article in Smithsonian Magazine, during the next several years, Heyman and his family spent more than $100,000 taking Carly to nearly two-dozen specialists. Her medical mystery wasn’t solved until she met with an interdisciplinary team at the National Institutes of Health (NIH) Undiagnosed Disease Program (UDP), where she was found to have a rare genetic disorder that causes symptoms that can be relieved through the use of a hormone patch.
“I set out to create a way that people like Carly could access over a dozen different medical experts all at once, in a very efficient, cost-effective way,” Heyman said in an interview with PSFK, a business intelligence company in New York.
How Does CrowdMed Work?
CrowdMed users create an anonymous patient account by completing a medical questionnaire. Then, so-called “medical detectives”—physicians, medical students, allied health professionals, and others—collaborate online in a moderated discussion exploring possible diagnoses. A proprietary algorithm ultimately evaluates the diagnoses and patients are provided a report with the top suggestions. Cash rewards are divided among the medical experts who identify a correct diagnosis. Patients pay fees ranging from $149 to $749 per month, with higher subscription amounts buying additional and higher-rated detectives and more reward money.
CrowdMed claims to have resolved thousands of medical mysteries, with more than 60% of patients being led closer to a correct diagnosis or cure and roughly 75% of medically-diagnosed patients having their CrowdMed diagnosis confirmed. On average, patients spent seven years seeking answers and incurring roughly $70,000 in medical expenses before submitting their case to CrowdMed, according to the company’s website.
How Well Does It Work?
The Journal of Medical Internet Research (JMIR) published an evaluation of CrowdMed in its January 2016 issue. The authors analyzed data from 397 cases completed between May 2013 and April 2015 to determine patient and case-solver characteristics, and case outcomes. About half of patients were likely to recommend CrowdMed, nearly 60% were led closer to a correct diagnosis, and 57% reported a decrease in medical expenses.
Despite CrowdMed’s success rate, the authors concluded, “Further development and use of crowdsourcing methods to facilitate diagnosis requires long-term evaluation as well as validation to account for patients’ ultimate correct diagnoses.”
In a Popular Science article, science writer Alexandra Ossola expressed concern about crowdsourced advice. While CrowdMed’s disclaimer states medical detectives’ suggestions “do not constitute medical advice,” Ossola writes, “It’s easy to see how a patient might just forget that and show up to his doctor claiming to have found the definite answer to his medical maladies instead of merely a suggestion.”
However, Darshak Sanghavi, MD, Chief Medical Officer and Senior Vice President of Translation at OptumLabs, believes crowdsourcing medical information may not be that different than the established practices of second opinions, physician consultations, or medical journal case studies.
“Crowdsourcing in medicine isn’t a completely foreign concept,” he stated in an interview for an episode of PBS’s “Nova” series. “It’s like a second opinion writ large,” he concluded.
Heyman remains convinced pooling the collective wisdom of the masses is key to solving some of what ails today’s healthcare system. In reference to inefficiencies driving up healthcare costs, Heyman told PSFK, “We have to find ways of improving or this system can’t sustain itself.”
Are there Opportunities for Medical Laboratories? Maybe.
CrowdMed is one more example of how conventional medical services are being supplemented by unorthodox approaches to providing consumers with increased access to medical information. This should be of interest to pathologists and medical laboratory scientists because of their role in helping physicians diagnose disease, and in selecting the most appropriate therapies and prescription drugs for their patients.
It’s too early to predict whether crowdsourced medicine will present a market opportunity for clinical laboratories. Nevertheless, the skills that board-certified clinical pathologists already possess positions them well for offering diagnostic services to patients with difficult-to-diagnose conditions. The challenge would be how to connect patients with clinical pathologists willing to offer these services, and how to pay pathologists for these services.
—Andrea Downing Peck