9 ms·

CrowdMed: We've solved hundreds of the world's most difficult medical cases

161 points by luu 12y ago

mberning 12y ago
I watched the testimonial videos and at the end of all of the ones I watch there was no definitive diagnosis and there was no affirmation that the patient got substantially better. Maybe they are just being vague to protect the privacy of the individuals featured in each testimonial.
- jheyman 12y ago
  On https://www.crowdmed.com/our-stories https://www.crowdmed.com/our-stories scroll down to Patient Success Stories and you'll see patients with more definitive resolutions. Those are completely anonymous, unlike the videos, so more medical detail can be provided.
devilsdounut 12y ago
How does a company cover itself legally? People in the US love to litigate, especially when it comes to medical issues.
- jheyman 12y ago
  See the "Privacy, Security, Liability, & HIPAA Compliance" section at https://www.crowdmed.com/faqs https://www.crowdmed.com/faqs
- maxerickson 12y ago
  At least some of what they are doing isn't particularly risky. I only read a couple of the profiles, but in this one, the recommendation is to see a professional for a specific treatment: https://www.crowdmed.com/our-stories/sanora https://www.crowdmed.com/our-stories/sanora The speech pathologist is the one that is doing the treatment there.
orblivion 12y ago
I love the idea. When asking for medical advice online, people often implore you to go see a doctor and stop asking people on the Internet. Unfortunately I think that's allowing the perfect to be the enemy of the good. Doctors have limited time and rarely want to spend a lot of it with you as it is. There needs to be a cheaper alternative to free them up. Granted the focus here is a little different. It's specifically tailored for people who have already asked a doctor and are at their wit's end. But I think the same principle applies to more mundane situations. Most of the time when I message my doctor with something I'm worried about, they call me in just to ask me some questions they could have asked me over the phone and then tell me I'm probably okay.
- carbocation 12y ago
  Ultimately, this site along with all of the rest concludes that you should "talk to your doctor": > "CrowdMed patients are advised to never act upon one of our diagnostic or solution suggestions without the care of a medical professional, who is ultimately responsible for determining the patient's correct diagnosis and treatment." This seems reasonable to me.
  - justboxing 12y ago
    Naw. I think that line was probably placed in there by the CrowdMed lawyers, to prevent and/or defend againsts Lawsuits. This way, they can pass the blame on to the "Medical Detective" whose diagnosis led to the Patient becoming worse, dying etc, after following the instructions or accepting the detective's diagnosis.
  - orblivion 12y ago
    Well, I guess it at least helps point your doctor in the right direction. I guess it wouldn't work for the mundane case then.
300bps 12y ago
There are a lot of people that suffer from health-related obsessive compulsive disorder (i.e. hypochondria). I imagine a site like this would be the worst possible thing for such a person.
- orblivion 12y ago
  Do you think it's worse than WebMD? The problem with things like that is that (as it seems to me) they don't give you realistic answers, they give you "cover your ass" worst-case answers. That's why it triggers so much panic (speaking as someone roughly in the profile you describe). In a situation where you're actually talking to someone like on this site, perhaps there's hope that they give you realistic answers. That said I agree that there is a potential problem, and there ought to be a good resource that gives you a good sense of what is a "reasonable" amount of worry. I'm not sure how that could be structured though, especially with the potential legal issues.
  - krschultz 12y ago
    One thing I learned when I started getting actually sick and wasn't yet sure of the cause - don't read WebMD. It will always make you think you have cancer. Especially since at the time I was being tested for cancer, it was really scary. Every article felt like "Have a headache? Could be sinus pressure ....... or brain cancer".
    - orblivion 12y ago
      I wonder where the point is that we can start to sue the lawyers who created this CYA environment for anxiety-induced heart conditions.
- jheyman 12y ago
  CrowdMed founder here, happy to chime in on this question. We consider it up to our Medical Detectives to determine whether the patient's symptoms are physical or psychological in origin. If the latter, then 'somatization disorder' or 'hypochondriasis' are perfectly acceptable diagnostic suggestions. That said, a lot of patients are given psychological diagnoses from physicians (i.e., "it's all in your head") only to discover on our site a physical root cause to their symptoms.
minthd 12y ago
I wonder how well a standard clinican, armed with a the right software(maybe the full version of [1]) would do at crowdmed ? [1]http://www.isabelhealthcare.com/home/default http://www.isabelhealthcare.com/home/default
- jheyman 12y ago
  The site has about $40,000 in cash reward offers up for grabs right now, so somebody should be motivated enough to find out!
  - CatDevURandom 12y ago
    The cash prizes are inconsequential compared to the liability a physician would take on. There are exactly zero insurance carriers that would cover any malpractice claim as a result of consulting on this site. Despite what the FAQ says about this "not constituting a doctor patient relationship." Good luck with that in court.
    - minthd 12y ago
      You can always use some other name,not use the title doctor, or even try to stay anonymous-Like the other non-doctors who consult on this platform. I'm sure the non-doctors on this aren't exposed to any legal risk, or else the FDA would have closed this site already.
      - Heewg9 12y ago
        Um, most of the medical professional bodies in the world would consider it professionally dishonest to offer any form of medical advice as a Doctor whilst hiding behind anonymity, and would likely start disciplinary proceedings over this.
        jrockway 12y ago
        Unless the NSA is one of those professional bodies, you can probably stay anonymous on the Internet successfully.
fsniper 12y ago
Crowd sourced House Md. I think that's a brilliant idea. I still don't now details about the inner functions like if anybody can be a detective? or do you need special education to be a detective? or who generates the report? but it seems to be sorted out and working currently. Of course with the expansion of the crowd and patients moderation will become a bigger problem. If it can be moderated at least for an acceptable size, this will be huge. How can we invest? :)
- jheyman 12y ago
  CrowdMed founder here See "How do you vet your Medical Detectives?" and "Who is your crowd?" at https://www.crowdmed.com/faqs https://www.crowdmed.com/faqs Our final reports are automatically generated in PDF format once a case closes. It's funny, just a few weeks ago a patient offered to invest his life savings in our company because he so believes in our mission and the value we provided. Unfortunately we had to turn him down, because our seed round closed a couple years ago :)
  - fsniper 12y ago
    I think you are doing a favour to humanity. Keep up the good work. Bug report: http://crowdmed.theresumator.com/apply http://crowdmed.theresumator.com/apply account is disabled.
  - marincounty 12y ago
    I would rather you turn down his offer because of professional ethics. Consider taking a guy's life savings because he felt he benefitted from "the value you provided", and "believed in your mission"? Every doctor on your staff knows most patients have no clue to why they are feeling better, and placebo plays a huge role. Besides being unethical for a patient to invest all of their savings into your startup; I think it is illegial in most states? Along with being a beneficiary in a trust, or will? Have a Licensed medical doctor respond to these questions. You might have a great service, but you're not coming across well on HN.
- axyjo 12y ago
  It's always lupus.
notahacker 12y ago
The bit I find intriguing is how the paid subscription packages aim to improve your diagnosis by actually reducing the number of eligible participants. That and (according to the FAQ) the unusual design decision of making flagging public. I wonder if the "try homeopathic magic pills" suggestions are efficiently eliminated, and whether reciprocal flagging behaviour has ever been an issue.
- jheyman 12y ago
  CrowdMed founder here The more expensive packages only allow higher-rated Medical Detectives to fully participate, which reduces the quantity but increases the quality of participants. FWIW, we've found that beyond 30 or so Medical Detectives, results quality doesn't really improve anyway. We've gone back and forth a lot on whether to make flagging public. The advantage of public flags is that users flag more carefully, the disadvantage is the potential for reciprocal flagging behavior.
deleted 12y ago
[deleted]
phren0logy 12y ago
One of the "medical detectives" on the front page, Daniel Auer, advertises himself as a homeopathic practitioner and naturopath. From his bio: > ... Dr. Auer augmented his initial plans to attend medical school and pursued a doctor of chiropractic degree instead... This sounds like hiring a psychic to do my taxes. Thanks, guys, but no thanks. Full disclosure: I'm an MD, and I practice science-based medicine. http://www.sciencebasedmedicine.org/about-science-based-medicine/ http://www.sciencebasedmedicine.org/about-science-based-medi...
- thirsteh 12y ago
  This brings a whole new twist to your username.
- adammichaelc 12y ago
  How much did you have to dig to find a detective with homeopathy in their bio? ;) One quack in the crowd doesn't mean that they are all quacks. PS If you actually believe you practice science-based medicine, you may be part of the problem. Medicine is mostly a guessing game, and will stay that way until we have genome-specific-personalized-medicine with real-time biofeedback mechanisms from sensors in the body.
  - the_af 12y ago
    Um, Daniel Auer is one of the 3 listed in the front page, so I guess he didn't have to dig much.
  - zck 12y ago
    He's one of three doctors listed on the homepage, which was the submitted link here. There's a difference between "we don't know everything" and "we have good reason to believe homeopathy is useful". Sure, maybe eating raw duck poop will cure asthma, but I'm not going to try it just in case it works.
  - CatDevURandom 12y ago
    I know it's unpopular to stick up for physicians but... > Medicine is mostly a guessing game Can you be more specific with that sweeping generalization? > and will stay that way until we have genome-specific-personalized-medicine with real-time biofeedback mechanisms from sensors in the body. And why do you think that? Again, by what study, authority, knowledge or reasoning? > you may be part of the problem. Actually no, it's the other way around. You are part of the problem. I'm so tired of people who have zero training or background in medicine or science half-haphazardly proselytizing without any data or evidence to them up. Please stop pretending like you know the answer to something this important if you aren't in the position to do so.
ig1 12y ago
One thing I've thought would be useful for a while is a platform to allow people with unknown diseases to get matched up with others with the same symptoms. While CrowdMed can help with rare diseases it's less useful in cases where a disease has never been diagnosed before. In recent years we've seen a number of diseases/conditions essentially identified by patients discovering others sufferers (often through online campaigns) and the commonalities / genetic testing helping identify the cause. But these have largely relied on serendipity. It would be great to have an online platform to allow people with unknown conditions to find each other. (this is especially true with long-tail psychological issues where diagnose is often still very weak)
- jheyman 12y ago
  While CrowdMed's focus is helping patients find a "known" diagnosis that can help return them to health, it can also be used to match up patients with an "unknown" disease with fellow patients or practitioners who can help them. It's part medical forum, part social network, and part marketplace.
- amelius 12y ago
  See: http://www.patientslikeme.com/ http://www.patientslikeme.com/
  - ig1 12y ago
    PLM is much more focused around known conditions and benchmarking those patients with each other rather than discovery of new conditions.
CatDevURandom 12y ago
How do you handle professional liability for these expert opinions? Medical malpractice is a very real thing.
Gatsky 12y ago
It's a good idea. In cases where there is a real diagnosis, but it isn't found there are probably these reasons, and CrowdMed addresses them to some degree: 1. It fits into the category of diseases which have amorphous and tricky symptomology eg Lyme disease, immunodeficiencies, Coeliac disease, temporal arteritis, rare inherited conditions. These are just cognitively difficult to diagnose. Having people from another perspective take a look (particular with the perspective of, hey, maybe this is something unusual) is helpful. Good primary care physicians usually have a list of 'easy to miss' conditions in their heads. 2. Patient related factors eg they don't communicate well, they can't afford to go to the doctor consistently, they have a huge anxiety overlay, they have many chronic conditions with overlapping symptoms etc. CrowdMed gives them another port of access to healthcare advice. 3. Doctor related factors eg just incompetence, over specialisation, too busy, too old, too young, too tired, too depressed, too male, too burnt out etc... Sometimes you just need to get a different type of person to look at the case. But, I do have concerns about how it's marketed. To say that you have 'solved' hundreds of the world's 'most difficult' medical cases is not a responsible thing to put on a front page that will be visited by patients. Firstly, what does 'solved' mean? I think to prove that you solved a case, you would need to have detailed and long term follow up, and I don't see any evidence of that. Do you have any evidence beyond the patient testimonial at a single time point? Also, how many cases are not solved? Secondly, 'world's most difficult' is silly marketing speak, like a detergent that gets rid of the 'world's toughest stains'. Presumably you haven't surveyed all the world's medical cases and ranked them by difficulty. It really puts me off signing up as a detective. Patients are vulnerable. They are scared and suffering. This sort of tagline just makes it look like you are trying to fleece them, despite all the goodwill elsewhere on the site.
ada1981 12y ago
This reminds me of MetaMed.com

161 points by luu 12y ago

I watched the testimonial videos and at the end of all of the ones I watch there was no definitive diagnosis and there was no affirmation that the patient got substantially better. Maybe they are just being vague to protect the privacy of the individuals featured in each testimonial.

jheyman 12y ago
On https://www.crowdmed.com/our-stories https://www.crowdmed.com/our-stories scroll down to Patient Success Stories and you'll see patients with more definitive resolutions. Those are completely anonymous, unlike the videos, so more medical detail can be provided.

devilsdounut 12y ago

How does a company cover itself legally? People in the US love to litigate, especially when it comes to medical issues.

jheyman 12y ago
See the "Privacy, Security, Liability, & HIPAA Compliance" section at https://www.crowdmed.com/faqs https://www.crowdmed.com/faqs
maxerickson 12y ago
At least some of what they are doing isn't particularly risky. I only read a couple of the profiles, but in this one, the recommendation is to see a professional for a specific treatment: https://www.crowdmed.com/our-stories/sanora https://www.crowdmed.com/our-stories/sanora The speech pathologist is the one that is doing the treatment there.

orblivion 12y ago

I love the idea. When asking for medical advice online, people often implore you to go see a doctor and stop asking people on the Internet. Unfortunately I think that's allowing the perfect to be the enemy of the good. Doctors have limited time and rarely want to spend a lot of it with you as it is. There needs to be a cheaper alternative to free them up. Granted the focus here is a little different. It's specifically tailored for people who have already asked a doctor and are at their wit's end. But I think the same principle applies to more mundane situations. Most of the time when I message my doctor with something I'm worried about, they call me in just to ask me some questions they could have asked me over the phone and then tell me I'm probably okay.

carbocation 12y ago
Ultimately, this site along with all of the rest concludes that you should "talk to your doctor": > "CrowdMed patients are advised to never act upon one of our diagnostic or solution suggestions without the care of a medical professional, who is ultimately responsible for determining the patient's correct diagnosis and treatment." This seems reasonable to me.
- justboxing 12y ago
  Naw. I think that line was probably placed in there by the CrowdMed lawyers, to prevent and/or defend againsts Lawsuits. This way, they can pass the blame on to the "Medical Detective" whose diagnosis led to the Patient becoming worse, dying etc, after following the instructions or accepting the detective's diagnosis.
- orblivion 12y ago
  Well, I guess it at least helps point your doctor in the right direction. I guess it wouldn't work for the mundane case then.

300bps 12y ago

There are a lot of people that suffer from health-related obsessive compulsive disorder (i.e. hypochondria). I imagine a site like this would be the worst possible thing for such a person.

orblivion 12y ago
Do you think it's worse than WebMD? The problem with things like that is that (as it seems to me) they don't give you realistic answers, they give you "cover your ass" worst-case answers. That's why it triggers so much panic (speaking as someone roughly in the profile you describe). In a situation where you're actually talking to someone like on this site, perhaps there's hope that they give you realistic answers. That said I agree that there is a potential problem, and there ought to be a good resource that gives you a good sense of what is a "reasonable" amount of worry. I'm not sure how that could be structured though, especially with the potential legal issues.
- krschultz 12y ago
  One thing I learned when I started getting actually sick and wasn't yet sure of the cause - don't read WebMD. It will always make you think you have cancer. Especially since at the time I was being tested for cancer, it was really scary. Every article felt like "Have a headache? Could be sinus pressure ....... or brain cancer".
  - orblivion 12y ago
    I wonder where the point is that we can start to sue the lawyers who created this CYA environment for anxiety-induced heart conditions.
jheyman 12y ago
CrowdMed founder here, happy to chime in on this question. We consider it up to our Medical Detectives to determine whether the patient's symptoms are physical or psychological in origin. If the latter, then 'somatization disorder' or 'hypochondriasis' are perfectly acceptable diagnostic suggestions. That said, a lot of patients are given psychological diagnoses from physicians (i.e., "it's all in your head") only to discover on our site a physical root cause to their symptoms.

minthd 12y ago

I wonder how well a standard clinican, armed with a the right software(maybe the full version of [1]) would do at crowdmed ? [1]http://www.isabelhealthcare.com/home/default http://www.isabelhealthcare.com/home/default

jheyman 12y ago
The site has about $40,000 in cash reward offers up for grabs right now, so somebody should be motivated enough to find out!
- CatDevURandom 12y ago
  The cash prizes are inconsequential compared to the liability a physician would take on. There are exactly zero insurance carriers that would cover any malpractice claim as a result of consulting on this site. Despite what the FAQ says about this "not constituting a doctor patient relationship." Good luck with that in court.
  - minthd 12y ago
    You can always use some other name,not use the title doctor, or even try to stay anonymous-Like the other non-doctors who consult on this platform. I'm sure the non-doctors on this aren't exposed to any legal risk, or else the FDA would have closed this site already.
    - Heewg9 12y ago
      Um, most of the medical professional bodies in the world would consider it professionally dishonest to offer any form of medical advice as a Doctor whilst hiding behind anonymity, and would likely start disciplinary proceedings over this.
      - jrockway 12y ago
        Unless the NSA is one of those professional bodies, you can probably stay anonymous on the Internet successfully.

fsniper 12y ago

Crowd sourced House Md. I think that's a brilliant idea. I still don't now details about the inner functions like if anybody can be a detective? or do you need special education to be a detective? or who generates the report? but it seems to be sorted out and working currently. Of course with the expansion of the crowd and patients moderation will become a bigger problem. If it can be moderated at least for an acceptable size, this will be huge. How can we invest? :)

jheyman 12y ago
CrowdMed founder here See "How do you vet your Medical Detectives?" and "Who is your crowd?" at https://www.crowdmed.com/faqs https://www.crowdmed.com/faqs Our final reports are automatically generated in PDF format once a case closes. It's funny, just a few weeks ago a patient offered to invest his life savings in our company because he so believes in our mission and the value we provided. Unfortunately we had to turn him down, because our seed round closed a couple years ago :)
- fsniper 12y ago
  I think you are doing a favour to humanity. Keep up the good work. Bug report: http://crowdmed.theresumator.com/apply http://crowdmed.theresumator.com/apply account is disabled.
- marincounty 12y ago
  I would rather you turn down his offer because of professional ethics. Consider taking a guy's life savings because he felt he benefitted from "the value you provided", and "believed in your mission"? Every doctor on your staff knows most patients have no clue to why they are feeling better, and placebo plays a huge role. Besides being unethical for a patient to invest all of their savings into your startup; I think it is illegial in most states? Along with being a beneficiary in a trust, or will? Have a Licensed medical doctor respond to these questions. You might have a great service, but you're not coming across well on HN.
axyjo 12y ago
It's always lupus.

notahacker 12y ago

The bit I find intriguing is how the paid subscription packages aim to improve your diagnosis by actually reducing the number of eligible participants. That and (according to the FAQ) the unusual design decision of making flagging public. I wonder if the "try homeopathic magic pills" suggestions are efficiently eliminated, and whether reciprocal flagging behaviour has ever been an issue.

jheyman 12y ago
CrowdMed founder here The more expensive packages only allow higher-rated Medical Detectives to fully participate, which reduces the quantity but increases the quality of participants. FWIW, we've found that beyond 30 or so Medical Detectives, results quality doesn't really improve anyway. We've gone back and forth a lot on whether to make flagging public. The advantage of public flags is that users flag more carefully, the disadvantage is the potential for reciprocal flagging behavior.

deleted 12y ago

[deleted]

phren0logy 12y ago

One of the "medical detectives" on the front page, Daniel Auer, advertises himself as a homeopathic practitioner and naturopath. From his bio: > ... Dr. Auer augmented his initial plans to attend medical school and pursued a doctor of chiropractic degree instead... This sounds like hiring a psychic to do my taxes. Thanks, guys, but no thanks. Full disclosure: I'm an MD, and I practice science-based medicine. http://www.sciencebasedmedicine.org/about-science-based-medicine/ http://www.sciencebasedmedicine.org/about-science-based-medi...

thirsteh 12y ago
This brings a whole new twist to your username.
adammichaelc 12y ago
How much did you have to dig to find a detective with homeopathy in their bio? ;) One quack in the crowd doesn't mean that they are all quacks. PS If you actually believe you practice science-based medicine, you may be part of the problem. Medicine is mostly a guessing game, and will stay that way until we have genome-specific-personalized-medicine with real-time biofeedback mechanisms from sensors in the body.
- the_af 12y ago
  Um, Daniel Auer is one of the 3 listed in the front page, so I guess he didn't have to dig much.
- zck 12y ago
  He's one of three doctors listed on the homepage, which was the submitted link here. There's a difference between "we don't know everything" and "we have good reason to believe homeopathy is useful". Sure, maybe eating raw duck poop will cure asthma, but I'm not going to try it just in case it works.
- CatDevURandom 12y ago
  I know it's unpopular to stick up for physicians but... > Medicine is mostly a guessing game Can you be more specific with that sweeping generalization? > and will stay that way until we have genome-specific-personalized-medicine with real-time biofeedback mechanisms from sensors in the body. And why do you think that? Again, by what study, authority, knowledge or reasoning? > you may be part of the problem. Actually no, it's the other way around. You are part of the problem. I'm so tired of people who have zero training or background in medicine or science half-haphazardly proselytizing without any data or evidence to them up. Please stop pretending like you know the answer to something this important if you aren't in the position to do so.

ig1 12y ago

One thing I've thought would be useful for a while is a platform to allow people with unknown diseases to get matched up with others with the same symptoms. While CrowdMed can help with rare diseases it's less useful in cases where a disease has never been diagnosed before. In recent years we've seen a number of diseases/conditions essentially identified by patients discovering others sufferers (often through online campaigns) and the commonalities / genetic testing helping identify the cause. But these have largely relied on serendipity. It would be great to have an online platform to allow people with unknown conditions to find each other. (this is especially true with long-tail psychological issues where diagnose is often still very weak)

jheyman 12y ago
While CrowdMed's focus is helping patients find a "known" diagnosis that can help return them to health, it can also be used to match up patients with an "unknown" disease with fellow patients or practitioners who can help them. It's part medical forum, part social network, and part marketplace.
amelius 12y ago
See: http://www.patientslikeme.com/ http://www.patientslikeme.com/
- ig1 12y ago
  PLM is much more focused around known conditions and benchmarking those patients with each other rather than discovery of new conditions.

CatDevURandom 12y ago

How do you handle professional liability for these expert opinions? Medical malpractice is a very real thing.

Gatsky 12y ago

It's a good idea. In cases where there is a real diagnosis, but it isn't found there are probably these reasons, and CrowdMed addresses them to some degree: 1. It fits into the category of diseases which have amorphous and tricky symptomology eg Lyme disease, immunodeficiencies, Coeliac disease, temporal arteritis, rare inherited conditions. These are just cognitively difficult to diagnose. Having people from another perspective take a look (particular with the perspective of, hey, maybe this is something unusual) is helpful. Good primary care physicians usually have a list of 'easy to miss' conditions in their heads. 2. Patient related factors eg they don't communicate well, they can't afford to go to the doctor consistently, they have a huge anxiety overlay, they have many chronic conditions with overlapping symptoms etc. CrowdMed gives them another port of access to healthcare advice. 3. Doctor related factors eg just incompetence, over specialisation, too busy, too old, too young, too tired, too depressed, too male, too burnt out etc... Sometimes you just need to get a different type of person to look at the case. But, I do have concerns about how it's marketed. To say that you have 'solved' hundreds of the world's 'most difficult' medical cases is not a responsible thing to put on a front page that will be visited by patients. Firstly, what does 'solved' mean? I think to prove that you solved a case, you would need to have detailed and long term follow up, and I don't see any evidence of that. Do you have any evidence beyond the patient testimonial at a single time point? Also, how many cases are not solved? Secondly, 'world's most difficult' is silly marketing speak, like a detergent that gets rid of the 'world's toughest stains'. Presumably you haven't surveyed all the world's medical cases and ranked them by difficulty. It really puts me off signing up as a detective. Patients are vulnerable. They are scared and suffering. This sort of tagline just makes it look like you are trying to fleece them, despite all the goodwill elsewhere on the site.

ada1981 12y ago

This reminds me of MetaMed.com