We spoke to Jared Heyman, founder and CEO of CrowdMed, about crowdsourcing the answers to medical mysteries and why he believes medicine should be a team sport.
What is CrowdMed? How did you get your start?
CrowdMed is a website that harnesses crowd wisdom to solve difficult medical cases online. We have a community of over 1,000 active “medical detectives”, as we call them. They usually are active in medicine—they tend to be doctors, nurses, med students, medical researchers and scientists, nutritionists, chiropractors, people from a wide range of different medical backgrounds. But we don't limit it to medical professionals. Some of our medical detectives are other patients who have had a particular disease themselves and want to help people who may have the same condition.
My inspiration to start CrowdMed was actually my little sister Carly, who spent three years with a really terrible undiagnosed medical condition. I watched as she bounced from doctor to doctor, seeing almost two dozen different medical specialists and incurring over $100,000 in medical costs before she was finally diagnosed. And I realized that her case was not that uncommon—almost everyone I talk to knows someone who has had a long-term struggle for a diagnosis or solution to a difficult medical case. We exist to help those people.
Medicine is traditionally based around this idea of one medical specialist, usually a doctor, working with one patient. But we believe that crowds are much wiser than individual experts. And we want to start applying crowd wisdom to medicine for the first time on this type of scale. So far we've resolved more 1,300 real-world medical mysteries on the CrowdMed site, with over a 60 percent success rate leading these patients to a correct diagnosis or cure. So we've proven that our concept works.
“We are certainly disruptive to the traditional medical system, in that it's based upon this notion of one expert helping one patient. But we believe that the best answers come from a group of people working together.”
— Jared Heyman, founder and CEO, CrowdMed
How does the model that you created work financially?
Currently we charge patients a fee to post cases on our site. We have packages beginning at $150 a month. But it's our goal to eventually make CrowdMed free for patients around the world, regardless of their financial means. So we're now actively partnering with employers to sponsor CrowdMed cases on behalf of their employees, and with health plans to cover the cost of CrowdMed cases for their members. And we hope to eventually partner with government agencies to make CrowdMed available as a free healthcare benefit.
What is the profile of a typical patient who uses CrowdMed? Can you talk more about some of the success stories you’ve seen?
The average patient who submits a case on the CrowdMed site has already been sick for seven years. They've already seen eight doctors. And they’ve already incurred over $70,000 in medical expenses related to their case. We resolve these cases in an average of just two months using an average of 22 medical detectives from around the world—and for an average cost of just a few hundred dollars per case. It's really vastly more effective and more efficient than the traditional medical system.
We've heard from hundreds of our patients with dramatic success stories. Patients who had been sick for many years and seen half a dozen physicians—yet their cases remained unsolved. And every single week we hear from patients telling us how we ended their struggle for medical answers.
One example is a boy who spent five years struggling with an undiagnosed condition. He came down with these strange symptoms when he was 12 years old. His mother took him to eight different doctors over the next five years; no one could figure out what was going on. He had severe body aches and fatigue; he couldn't go to school. His life was really on hold as he was trying to solve this medical case. His mother submitted his case on CrowdMed, and in just a couple of months, we aggregated more than 40 medical experts around the world who diagnosed him, and he is now living a normal life.
Have you seen much resistance to your model from the traditional healthcare community? How have you responded to that?
We are certainly disruptive to the traditional medical system, in that it's based upon this notion of one expert helping one patient. But we believe that the best answers come from a group of people working together.
We keep CrowdMed very inclusive—the patient can invite anyone they like to participate. Their doctors can participate and interact with medical detectives on their cases. And we don't limit CrowdMed to just our own existing community. So even though it's a different structure than a traditional system where a patient is seeing one doctor at a time, we've made it very inclusive of people from all around the world.
Have you seen a shift in the way technology has been used since you started CrowdMed?
First and foremost, we're a technology company—and it's truly software that drives CrowdMed. Our process is 100 percent automated, from when a patient first visits our site all the way until they get their final results. So it’s infinitely scalable, and that wouldn't be possible without our software.
Our product has evolved a lot since we launched it about two-and-a-half years ago. We’ve built a lot of features to facilitate more communication and collaboration between our patients and our medical detectives, and almost all of the product changes we make are things that are requested by either our patients or our detectives. We’ve really tried to tailor CrowdMed to meet their needs.
For example, many patients wanted to be able to have more communication with the medical detectives participating in their cases. So we created a messaging feature that allows patients and detectives to message each other directly. We’ve also done a lot of other things around community moderation and creating a reputation system so our patients can tell who the best medical detectives are. It takes a combination of all the features we’ve built to make CrowdMed so effective.
You’re collecting a lot of sensitive patient health information. How do you handle security and compliance issues?
To solve patient cases, we have to collect lots of medical data from our patients, and we recognize that this is very sensitive information that patients do not want to be associated with their true identity.
We do have to put the case in the public domain to crowdsource our medical answers, but we do this 100 percent anonymously. Patients are identified only by a pseudonym on our site, and no personally identifiable information is ever included on their CrowdMed case. And we have a lot of IT security policies and processes in place to safeguard the patient's identity so that it will never be matched with the medical information on our site. We take that very seriously.
Why do you believe that crowds are a smarter and better way to solve medical problems than just the individual experts? And how do you guard against the idea that crowds can often be a source of incorrect information?
The problem in today's medical culture is what I call the Doctor House Paradigm, which is this notion that any medical mystery can be solved by a lone genius working in isolation, if only the patient can find him or her. And it's this paternalistic paradigm that gives us great comfort emotionally, but I believe it's simply untrue. Because of how much medical knowledge exists today, it's simply impossible for one doctor, no matter how brilliant, to keep up with it.
But crowds don't have this limitation. A crowd collectively can essentially be infinitely wise, and that's why we believe that crowds are in a much better position to solve difficult medical cases than an individual expert, no matter how brilliant.
The trick to accurately crowdsourcing something, especially as complex as medical answers, is having the right mechanism in place to separate signal and noise. So whenever you crowdsource something, there's going to be signal—good answers—and there's also going to be noise, or bad answers.
We've developed CrowdMed to be the optimal mechanism for separating signal and noise. And we’ve made sure that even if bad things are suggested on our site, only the really good answers are assigned a high level of probability and actually make it to our patients. We have lots of technical mechanisms in place to facilitate that— community moderation, a reputation system, and a point allocation system to assign accurate probabilities to the different suggestions that come up. They all work together synergistically to ensure that our patients end up with only the best answers.
How do you think your business model might affect the healthcare industry in the long term?
In terms of how we're affecting the industry as a whole, we really want to change medicine from an individual sport to a team sport. Right now, if you see a doctor, you're typically speaking one-on-one with that physician. No one else is in the room. The doctor might call a buddy from med school, but that’s usually the extent to which they’re tapping into the wisdom of their peers. There’s really not that much collaboration within the mainstream medical establishment. In contrast, we like to get 20 or more medical detectives participating on a case—really getting a team of people from a wide variety of different disciplines and from all around the world to collaborate on solving a patient case. And we won't be happy until we've truly made medicine a team sport worldwide.