Wednesday, May 14, 2014

Crowdsourcing medical advice

A website called "CrowdMed" offers "crowdsourcing" of medical diagnoses. You enter a narrative about your illness and the crowd, which may not necessarily all be MDs, comes up with a diagnosis for you. Patients are supposed to discuss the most likely diagnoses with their own physicians. Via a somewhat complex system, the medical detectives can win money if patients offer cash rewards, which are not mandatory.

CrowdMed takes 10% of any money put up by patients as its commission. They claim they and anyone who offers an opinion are not legally liable since all medical opinions are anonymous, patients are told that only their real doctors can provide a definitive diagnosis, and all diagnoses are based on the pooled input of many contributors.

I have a friend who has knowledge of medical crowdsourcing that antedates CrowdMed.

He knows someone who is into self-abuse like marathons, triathlons, etc. She always has some ache or pain and goes to a massage therapist or a chiropractor, who offers a diagnosis. Then it’s off to the natural food market for some organic potion. The person behind the counter does the prescribing and maybe a bit of fine-tuning of the diagnosis. Friends and acquaintances are also free to lend their expertise. The most highly prized diagnosticians are wives of doctors, especially those who belong to the garden club. The patient would never consider a recommendation to see an actual doctor.

He has no data on the accuracy of the diagnosticians or the outcomes of the patients.

I was going to ask who in their right mind would ask a bunch of anonymous strangers for medical advice, but then I remembered that I had recently written a post about the people who ask me about their undiagnosed abdominal pain. It turns out there are a lot of such people. 

On the CrowdMed website, most of the cases described are indeed true mysteries. Take this one for example:

Keturah, 39 years old, Oregon, United States—who describes symptoms in 11 different areas of the body using a mere 1689 words.

I wouldn't know where to begin to solve that one.

Unlike the combination of the massage therapist, chiropractor, natural food market clerk, and the doctors' wives, CrowdMed claims it has an 80% success rate in achieving a correct diagnosis.

When I started writing this post, I had intended to ridicule CrowdMed, but I have changed my mind. They may have found a way to monetize what I've been giving away for free. They also have a classically good business model which involves having other people do the work.


Anonymous said...

If I were the mischievous type, I would go there and diagnose gluten-sensitivity, fibromyalgia, or antibody-negative chronic Lyme disease.

I wouldn't be surprised to get quite a bit of money (at least at first).

Anonymous said...

So long as the patient takes the suggested diagnoses to their own physician, what is the harm?

Anonymous said...

Now Skep, I always have liked you and can respect you when we differ but "He knows someone who is into self-abuse like marathons, triathlons" crossed the line. My buddy ran 50+ miles, her daughter 50+, and her hubby set the course record at about 130 miles, in 24 hours for a cancer run. Me I've done a marathon, multiple halfs, and tons of the others. I have done swim meets and tri's.

Our favorite image has a runner with both thumbs up and the caption reads:

Runners have 3 natural enemies: drivers, dogs, and DOCTORS.

That being said, I've been able to solve some problems like that because medical school does something to you and being blind can do that to you. I've seen some doctors completely miss the boat, so maybe people putting their heads together to get differential dx'es when the first don't work isn't a bad thing?

Isn't it all about giving the patient a shot at getting better?

Diane said...

I think such a service would not exist if patients felt they were getting the answers they needed. Our daughter is complex, but I have been flabbergasted at the advice we have gotten, or not gotten over the past 19 years from Drs. From "She is fine, her kidneys are fine(despite nephrotic proteins)she just needs to poop more." To, "she has no head control and is unable to smile at 10 months because you "hold her too much and don't let her scream." Sadly, I recount far too many cases of us wasting our money. We have also had a lot really terrific Drs thankfully, but too many really horrific experiences to ever trust completely again. I think this service is a disaster waiting to happen, but if they did not have a massive market of patients who have gotten similar laughable advice even once as to what we have experienced, such a service would not exist. Heck, surely the wanna be medical detectives would guess better then "you just need to poo" and your kidneys will be fine. :-)

Anonymous said...

I tell ya, all you need is gluten-free rain, anti-Lyme stuff, running, and local-sourced water. Also lasers. And robots.

Skeptical Scalpel said...

First Anon, don't forget all the autoimmune diseases a la Dr. House,

Second Anon, I didn't say it could do any harm. I'm just not sure how much good it can do.

Third Anon, I don't see how doctors are the enemies of runners. There are many sports medicine specialists and orthopedists who have helped injured runners.

Diane, yes indeed, there are some bad doctors out there. I'm not sure how crowdsourcing a diagnosis is going to necessarily fix that. You still need to see a doctor to get treatment. If you have a doc who tells you the kidneys will get better if you poop, you need to find another doctor.

Fourth Anon, I agree, but the local-sourced water must be artisanal.

Libby said...

I wish you had a "like" or something like a grin so we can acknowledge a post.
Fourth Anon, yes it MUST be artisanal water...can't have any of that natural stuff that comes out of the ground or from the mountains. Needs a fancy label too. And a unusal shape bottle. Glass of course.
I "self-abuse"...just on Monday I was playing tag with 6-9yr. olds and misjudged the distance from a ladder step on the playground equipement and now I have a sprained ankle & mild cuncussion. I'm ok...headache. I should've tried CrowdMed first before seeing my Fam. Dr. could've saved myself a visit and spent time worrying I was going to end up like Mohamad Ali.

Anonymous said...

All of you who think this is funny should first try out the shoes of those who spent years trying to have a doctor, any doctor, figure out why they are sick. Speaking from personal experience, there is nothing worse than bring in a state of limbo where you are sick but no one can figure out why. For some, it is a fate worse than death. Perhaps CrowdMed will attract a few "crazies," but I suspect many of the patients on there are quite the opposite. But let's all have a laugh at their expense, shall we?

Anonymous said...

Diane, sorry to hear of your troubles. Prior to my diagnosis, I spent years being mocked and ridiculed by physicians who didn't believe I was sick. It was a painful and humiliating experience. I can't imagine how much worse it would be to have a sick child and face ridicule and scorn from physicians while your child remains untreated. And people wonder why CrowdMed is catching on? God bless and take care.

Anonymous said...

Sorry for the dark humor; I doubt that anyone is laughing at the patients. It is of course understandable that someone with a chronic malady desperately wants answers. But, the abundant and lucrative fake diagnoses like gluten intolerance (except for the 1% with celiac), chronic Lyme (without antibodies how is this scientifically valid), micro-nutrient deficiency (shades of homeopathy), are just giving false hope.

Sadly, there are many physical and mental
maladies with no clear diagnosis or treatment. Pretending otherwise doesn't help.

RuggerMD said...

I wish many people would really just describe what "sick" means.

Anonymous said...

Rugger - Diane's child isn't sick?

Anonymous said...

RuggerMD - me? I have a glycogen storage disease per my neuro. Previously told by dozens of medical professionals that there was either nothing wrong with me, or it was all in my head, or I had fibromyalgia, or that I was just looking to get out of work on disability, etc. etc. etc. And, of course, the sad part about people like me is, the more I went looking for answers, the more I was accused of Doctor shopping and be eing a nut job. Well, yes, I certainly was Dr. shopping, because all the previous doctors had no idea what they were talking about. So I guess I'm guilty as charged on at least one count. But, from what I understand, glycogen storage disease is hardly a psychiatric disorder, so I still respectfully request that I not be labeled as crazy. Took more than 5 years before I got diagnosed.

Unknown said...

It is a pretty interesting business model...the element I'm always impressed by is how crowdsourcing can yield such accuracy. "Wisdom of crowds" is a real thing. In a large enough data set, the answer will be there and is commonly correct. Big Data will continue to impact medicine in much more direct ways than Crowd Med.

Skeptical Scalpel said...

David, I agree crowdsourcing can be amazing. I'm not sure about its role in medicine because if you read the scenarios on the CrowdMed site, you will find that most of them are incomplete. None have physical exam findings, and the stories often lack important details. Even if one engages the patient in a chat, it would be hard to get all the information needed such as labs and imaging results.

Anonymous said...

There is actually an opportunity here for a site in which the patient uploads his/her medical records including labs and imaging reports. The site reviewer truncates the stuff to a manageable level, and the crowd gets a crack at it.

Many of the crowd will be docs, but should be immune since they won't be acting as physicians, just another poster on the net.

The initial questioner will bid a fee, and after some fixed period of time, must award the fee to one of the responders. The site collects a small percentage, and profits on ads.

Any venture capitalists here?

Skeptical Scalpel said...

Anon, you might have something there. But you are going to have to pay me a lot to truncate a voluminous medical record. Thanks to the EMR, there's a lot of chaff and not much wheat in today's charts.

Anonymous said...

I was half-kidding with my medical crowdsourcing proposal, but I am now thinking that it can be a real project.

Summary of cases can be done piecework by moonlighting residents (they prob. will work for extra pizza toppings). The responders will likely be medical or very knowledgeable lay people who like the intellectual challenge. The payment offered by the "patients" would correlate somewhat with the level of expertise they want.

Best of all, in a business sense, most of the content is generated by the crowd.

There will be high start-up costs to gain a foothold and to seed questioners and responders. But, I may really give this a go.

Thanks SS.

Anonymous said...

The problem with trying to separate the wheat from the chaff before putting a case on CrowdMed is that undiagnosed patients have already gone through the experience of having their doctors decide that much of that patient's story / lab results / medical history is chaff. For patients who take their case to CrowdMed, they need their audience to sift through their entire record to see if any of the stuff previously classified as chaff is actually wheat - an intermediary editor would defeat the entire purpose of the website.

Skeptical Scalpel said...

Second Anon brings up a very good point. It may hinder the detective work if someone is editing the material.

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