
CrowdMed: We've solved hundreds of the world's most difficult medical cases - luu
https://www.crowdmed.com/
======
phren0logy
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-
medi...](http://www.sciencebasedmedicine.org/about-science-based-medicine/)

~~~
adammichaelc
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.

~~~
CatDevURandom
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
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)

~~~
amelius
See: [http://www.patientslikeme.com/](http://www.patientslikeme.com/)

~~~
ig1
PLM is much more focused around known conditions and benchmarking those
patients with each other rather than discovery of new conditions.

------
notahacker
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
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.

------
orblivion
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
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
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.

------
Gatsky
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.

------
mberning
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
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.

------
minthd
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
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
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
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
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.

~~~
minthd
Why would a medical body would have problem with a doctor - who doesn't use
his title or name - that posts info on a forum ? he isn't deceiving people in
any way , and he isn't using his title in a wrong way.

------
fsniper
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
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 :)

~~~
marincounty
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.

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

~~~
jheyman
See the "Privacy, Security, Liability, & HIPAA Compliance" section at
[https://www.crowdmed.com/faqs](https://www.crowdmed.com/faqs)

------
300bps
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.

~~~
jheyman
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.

~~~
sithu
I would be very interested in seeing a list of diagnoses from cases that were
solved correctly. It seems to me that once someone with a difficult to
characterize condition has gone through 5-7 physicians, any 'diagnosis' that
comes out at the end is either wrong or a placeholder until technology
advances.

~~~
jheyman
While we don't disclose our full list of final diagnoses, I can give you some
statistics from our 700+ cases resolved to date:

\-- no single diagnosis is more than 2% of the total, except for one (Lyme
disease at 2.3%) \-- 95% of these have come up as final diagnoses only once or
twice in the history of the site

So it's fair to say that it's a VERY long-tail list. Also:

\-- our current success rate is 70% (i.e., the patient told us that we brought
them closer to a correct diagnosis or cure) \-- about 50% of our final
diagnoses are medically confirmed by the patient's doctor

These statistics are based on our post-case surveys, which not all of our
patients answer, but they should be directionally accurate.

~~~
Fomite
Lyme disease, or Chronic lyme disease?

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

------
ada1981
This reminds me of MetaMed.com

