This brings up a big issue with this type of gamification. If someone prescribes a solution which has a superficial short term effect (think painkillers, etc), they may be rewarded in 'points' (e.g. money) because the patient is able to see a direct effect. This would reward treating symptoms rather than the underlying problem and could result in sub-optimal treatment. Unless this website is planning on adjusting rewards based on long term effects on the order of years, I'm not sure how this would be avoided.
Perhaps this is a side note to your point, but if when you say "ect" you mean electroconvulsive therapy, then I'll note that ECT has excellent efficacy for major depressive disorder among others and is well-studied: http://en.wikipedia.org/wiki/Electroconvulsive_therapy#Effic...
It is hard to believe that anyone would want an electroconvulsive therapy based on an Internet advice. Even if, no doctor in his right mind will perform it just because the patient demands it.
If you eat a sugar pill with an "imprint of camomile" and it makes you feel different, it's neither the sugar nor the imprint, but your own belief that does that. However the "evidence based medicine" may conclude it was the spirit of camomile or the lovely sperical shape that made all the difference. Evidence must be supplanted by the reliable reproduction of the results with all variable factors accounted for. Otherwise it's just guessing.
A lot of "alternative medicine" is just not science, and simply does not work. Unless you consider being temporarily "cured" by your own endorphins as an instance of evidence based medicine.
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.
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.
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.
Seeing a comment like this, on HN, in 2015, just boggles my mind.
I'm glad that very good "guesses" from people that have been studying medicine all their life, benefits from centuries of accumulated scientific knowledge on the subject, and used cutting edge diagnosing equipment were able to completely heal my crucial ligament when it broke, or were able to save my mother's life when diagnosed with breast cancer.
How exactly do you practice SBM? I find this difficult to believe, since as far as I'm aware there are no science based medical schools, no science based clinical guidelines, no research into the efficacy of science based treatments, etc. As far as I can tell it's just a poorly defined idea that isn't even logically coherent enough to have any real world practitioners.
For whatever flaws may exist with naturopathy, at least it's a real thing with legitimate practitioners.
edit: Also, your assertion that Dr. Auer advertises himself as a homeopathic practitioner isn't even accurate. His actual bio states, "Dr. Auer is continuously furthering his education and understanding of the body through post-doctorate courses and various seminars ranging from functional medicine, functional endocrinology, natural hormone balancing, holistic nutrition, homeopathy, herbology, chiropractic neurology, and various chiropractic and soft tissue techniques."
In other words, he is saying that he has studied homeopathy to some extent. Which if you haven't done, you're probably not a very good doctor.
> I'm aware there are no science based medical schools,, no science based clinical guidelines, no research into the efficacy of science based treatments, etc
Since you don't actually support your argument with any data, citations, or rational points, what would you say all these things are based on?
> For whatever flaws may exist with naturopathy, at least it's a real thing with legitimate practitioners.
Can you please define "it's a real thing" and "legitimate" and "practitioners" in that statement?
>Studied homeopathy to some extent. Which if you haven't done, you're probably not a very good doctor.
Tell me again how you are able to judge what makes a good doctor? By what authority, knowledge or reasoning?
SBM believes that rather than treating patients using evidence based medicine, you should look at the all of the scientific evidence about the efficacy of a treatment, but then weight that evidence using preexisting scientific beliefs about the world in general.
The problem is that it's not clear whose gets the decide what the existing scientific beliefs are, how the evidence should be weighted, whether this results in better patient outcomes than treating patients using evidence based medicine, etc.
+1 for pointing out the problems with SBM. While I truly believe in it, it's always good to counter some people thinking it's the ultimate solution which will somehow solve all problems in medicine.
As far as I know, the only serious proponents of SBM are the authors of the sciencebasedmedicine.org blog. There don't seem to be any scholarly articles on the subject, and the only books that exist are just compilations of the blog posts.
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)
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.
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.
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.
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.
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."
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.
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.
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.
On 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.
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.
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.
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.
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.
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 :)
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.
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:
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.
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.
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".
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.
This is a beautiful thing. I have had a medical issue for a little over three years that no doctor can figure out, and I've concluded that doctors don't know how to troubleshoot. They know how to look at the symptoms, and if they have seen the issue a lot, or for some reason specialized in what you have, then they can solve it. Other than that, they don't know what to do, or who to refer you to.
I was thinking of starting an educational institution, and a hospital that would teach and have doctors who can troubleshoot. But I don't have the time, connections, or money to do something like that. It seems like you're taking a different approach, a much better approach. I hope this isn't a money grab, and I hope you change the world.
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.
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.
> ... 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...