WhoIsSick.org: Hypochondriacs Welcome!

Thanks (I think) for the writeup. A couple of thoughts - take it for what its worth
1. I never intended this to be a scientific epidemiological site. Is Youtube Oscar worthy? Is your blog award winning journalism. No. The website was just a platform to allow people to have another avenue to share and learn about sicknesses that are going around. I think people realize its user generated and this inherently has limitations.
2. The symptons are "medically accurate". Again, if you ask the common person walking down the street (not your circle of MDs) they way people think about symptoms are based on how they feel. That is why I intentionally did not have a diagnosis section but purely a symptom section. Try to ask a friend is not medically trained and you might find that these categories actually make sense.
3. Sicknesses floating the Bay? I guess it does look a little weird. This happens because we randomize the location of postings in a few mile radius of where you indicated to provide another level of anonymity. I guess occasionally, they will show up over water.

I guess ultimately, I understand the problems with the site from a medical perspective but my thought is that is better to provide more information than less - an opinion that most non-medical people share but that most medical people are opposed to.

I would be happy to answer specific questions but just wanted our perspective aired.

PT Lee:

We have not won any awards in journalism, but one day we might: we strive hard to present the latest in medtech from a clinician's perspective. Also, we try to be cautious when presenting unsubstantiated claims and forward-looking ideas.

But it is not about us, it is about hearsay that your site is presenting. No one can or will be able to make any rational decisions based on this data (it's not even data, to be frank). Has anyone, yet?

To compare this site to Dr. John Snow's scientific methods is even more horrendous. David is a career science journalist with stupendous main stream media credentials, TV appearances, and journalism awards. Pretty bad, isn't it?

P.S. Fever (Chills) are two different symptoms. One can have chills without a fever.

You are really over-reaching with your defense of the scientific method here. John Snow's map was just observation, albeit careful observation. So while this website may not be careful, it's not an entirely different kind of knowledge than what Snow did and Science with a capital S. It's also odd that you assume the average person will fail to explain their own symptoms in a general sense, not needing to be medically precise. This kind of arrogance seems outdated.

I wouldn't put down "the peasant experience" considering for thousands of years, doctors were actually harming patients with practices of blood-letting and balancing the four humors, drilling holes in people's brains to let our evil spirits, etc.

While doctors and epidemiologists are now certainly more qualified to diagnose symptoms and identify the spread of diseases, it's not like this site is violating some kind of epistemological rule.

Mike Love:

Medicine became a science at the end of 19th - beginning of 20th century. That's when practices like blood-letting were disposed with. (Actually, there is evidence that low hematocrit, at around 30%, is beneficial; at that number there is so-called "near wall effect" inside blood vessels, and the resultant increased oxygen transfer across capillaries; hence blood-letting might actually be beneficial.)

Now, all that said, can you show, please, how to use the map in any meaningful fashion?

I think the concept of the website is interesting, but a map of people's symptoms is pretty useless to both those in and outside the medical profession. I mean, take headaches. if everyone in your neighborhood is having a headache due to migraines or tension headaches, you wouldn't be concerned that there is some sort of "outbreak." On the other hand, if everyone happened to have a spinal tap and discovered that they have meningitis, that's something to worry about.

I say, get rid of the symptoms, and just let people input their disease after they get a diagnosis.

Even better would be a map of people who haven't taken their vaccinations, so that you can track them down and immunize them. You could be some sort of Vaccine Vigiliante.

Great discussion. I really want this to be productive - I think we are all passionate about the general area, just have different takes on what this means. Hopefully, we can do this without being combatative.

1. Is it useful? Honestly, I don't know yet. I launched the site 1 month ago. But I have gotten emails from professors, doctors, healthcare professions, etc. who have expressed interest in what the potential of the site could be. Is it perfect right now? Absolutely not. It is at least a step in the right direction of providing new information, I would vote yes.
2. Is MedGadget the perfect site to report on things like WhoIsSick? Probably not. Your site is for more confirmed medical trends. There are plenty of site that will report more risky and less conventional news. Would our site have come out of a hospital or pharma company - probably not. That is the role that venture capital, entrepreneurship, and technology play.
3. How is the site useful? I leave that to the market but I've gotten (overall) great feedback - even from medical professionals. They like and say they will use the site for an additional means to see sicknesses in a timely fashion, if there are sicknesses spreading. Also, no other source can even start to provide things at such a granular localized level. The charts have specifically gotten a lot of interest in being able to see approximate trends in what kinds of symptoms are most common in an area as well as eventually (once we are in steady state) if there are more or less sicknesses being reported.
4. Ultimately, the fact that people post and people look is some validation that at some level, people find something useful in the site - even if only for curiosity and entertainment. We'll see if this lasts. I didn't put up this site to change the world or fix health problems. I did it because I saw a lack of information available to consumers and this is the only way to get it.

PT Lee:

Since you are asking how to improve your site, here's my $0.02. You have a nice interface. Unfortunately, (and I am not an expert on data processing) your data is off. It is off because of how it is collected, and it is off how it is presented.

Furthermore, your science is off. Here you have to decide whether your site is going to be run by hypochondriacs (hey, they also need a site!), or your service will be valuable and real, and it will be respected. You know about Wunderground? Dedicated individuals collect weather data, present it to the public for a common benefit. Imagine Wunderground run by individuals sitting at home, and posting their room temperatures. Or imagine individuals looking out of their windows, and posting their thoughts on weather forecasts for tomorrow. Science is not a majority's opinion. And, again, scientific method is not based on just an observation.

The choice is up to you. You can assemble a group of individuals (epidemiology buffs, or epidemiology hunters) interested in medicine and public health. They don't have to be doctors, or MPHs, but they have to love the science involved in this type of work. They can do the investigations, and as a result, provide the service to the public. Real respectable, valuable service.

Or you can have the site featuring darts thrown at the map.

Dr. O:
Interesting thread... I am big believer in wisdom of crowds philosophy that few users can't skew statistics. Without getting into argument about whoissick.org and its utility, I wanted to say have you ever checked out http://forums.craigslist.org/?forumID=43 or other sites such dailystrength.org or any other popular medical forums on the net? The question is would this have served the purpose and utility if only doctors or research scients got involved in the process. If you checkout these forums it is unbelievable how people help each other without intervention of doctor. I don't think the intent of these forums is to dissuade seeing a doctor but more importantly to help each other so you are better informed. So from that perspective I think whoissick.org is just another piece of information, nothing more and nothing less. Anyway thats my two cents...

Regards
Adam

Adam:

I agree with you that the internet is a great resource for patients. I also believe (and know) that to any illness there are different components, such as physical illness itself and psychological component. (I often tell my father-in-law that if he would think positively, he will have less illnesses and will feel better.) Now, it terms of value these forums are great for psychological help, bonding, etc etc. However, frankly, I am not a big believer in "touchy feely" crap that these forums present, when it comes to diagnosis or treatments. I don't believe that they are a good place to learn about the disease . I know how much garbage these forums contain in terms of my own profession (anesthesia; epidurals are evil; spinals are dangerous, etc etc...) They are filled with superstitions, hearsay, and bias. You go to any (ANY!) forum to learn about vaccinations, and they are dumpsters of info.

Again, and again, and again: medicine is a science, based on scientific methodology, and not on what people believe. (You and all your buddies might believe that you can float to the moon on air balloon, or fly to it on Cessna, but physics says that you need a certain escape velocity. So, it really does not matter what you, or people on your forum think.)

Now. Since you are a fan of the site (you call it "another piece of information," I call it jabberwocky ), please tell me how you were able to use it to make a rational decision.

P.S. Do you really believe that public health experts did not think about such a system? The idea is old, hence Whoissick is not so revolutionary. The big problem is old one: data, data, data...

Alright, I've gotta jump in now after that "forums are medically accurate" bit. Thankfully, Dr. O pretty much knocked that out of the park for me, but I'd just like to reiterate how UNBELIEVABLY inaccurate forums like those are for. When having our first child, my wife, an RN, checked out some forum for curiosity and the info there was shocking. It was basically a bash-doctors-fest, advised people to eat before getting anesthesia but to "sneak it in when dr/nursers weren't in the room" etc. . . Nuff said. Medical Forums of lay persons are useless for information and only good for emotional support, and even then, just barely.

Now, on to the topic at hand. This website isn't even close to a new idea and I went and found the perfect medgadget post to demonstrate it. Back in october '06 we posted about HEALTHmap.org, a program created by 2 doctors at Children's Hospital Informatics Program in Boston:

"While working on a state-funded program to track disease outbreaks in Massachusetts, the two discovered some inconsistencies in how information is reported. Some sources, such as ProMed-mail, provide very specific data that is verified by medical experts, but the process can be lengthy. At the other extreme, newspaper articles and blog entries come out far more quickly, but they are more likely to contain errors such as unconfirmed reports about avian flu infections in a country.

"You always have this trade-off between timeliness and specificity," said Brownstein."

At least the realize the scientific tradeoffs between speed and accuracy. Their site also gives readers the option to map only information from credible sources like ProMed, WHO, etc...None of this Johnny-come-lately i think i have a fever b/c my temp is 99.1 (which is exactly what pts say ALL the time ).

So now we've presented sources for incredibly accurate maps of medical illness (the important illnesses that is, not the sniffles), as well as maps that combine a series of variable quality sources.

We liked the idea of Whoissick and wrote about it in our medical newsletter, www6minutes.com.au But the feedback we got from the coordinator of our national inflluenza surveillance program was not very positive. Basically, he echoed the comments made here about the reliability and consistency of the reports. By relying on self reporting of symptoms the website may risreport illnesses that are misdiagnosed. It also depends on reports from people who are technologically savvy/motivated and have access to a computer - creating selection bias by missing reports of illness from people who can not or don not want to report symptoms.
He said it was an interesting interface, but liable to information overload.
On the positive side, he said website like whoissick could potentially pick up cases that are not usually reported to medical professionals.

Just a short comment: Professional epidemiology is best done by professional-based surveillance systems, which exist for example for influenca in many countries. This works, but still it might be interesting to detect a regional outbreak of, say, a pandemic influenza virus, a little earlier, which is only possible with a symptom-based approach. This is, by the way, exactly what is expected from, say, a kindergarten, which will close in case of an influenza pandemia not when influenza is diagnosed with a child, but as soon as typical symptoms occur in a number of children, even before any of these kids is definitely diagnosed. The point I would like to make is that a symptom-based map could indeed supplement professional surveillance. Of course you always have your hypochondriacs, but mathematically this could be treated as some kind of background noise. I am not an expert in this field, but I can imagine it could be worthwile to work with some kind of pattern recognition algorithms, which in case of a pandemia might help to find new regional outbreaks one or two possibly important days earlier.

your understanding of the scientific method would not stand up to the test of current historical methods in science and technology studies. Furthermore, the polemical way you talk about whoissick is rather unproductive and reactionary not becoming of a good technology analyst. One should not romanticize the impact of whoissick but the history of the so-called scientific method is not as pure as you claim. Just take a look at any of the work of any reputable STS scholar and you'll find that your own views are rather inaccurate. the binary of scientific method vs. the so-called "peasant" experience, whatever the fuck that is, is flawed. Why then are we facing so many IP fights over biopharma companies and bioprospecting and patenting this "peasant knowledge". Your whole debate and way of approaching whoissick is rather infantile and uninteresting. By the way, Google.org is spending a ton on their INSTED project that seeks to acquire data on rumors and early reports on disease outbreaks--I'm sure you think that because Google is doing it and that epidemiologists are running the program that the two are completely different epistemologically. In some ways they probably are, but to write half-cocked critiques as you have done only blinds you to the potential value of the project on some levels and represents are a rather dated and arrogant way to engage with peers. good luck with your blog.