Microsoft Researchers Study "Cyberchondria"

Slatterz introduces us to the first major study on "cyberchondria" by Microsoft researchers (abstract, paper [PDF]). The news that it can be a bad idea to search the Internet to see if you have a terrible disease should come as no surprise. According to the NYTimes article, the syndrome has been known as "cyberchondria" since at least the year 2000 (we discussed it a few years back). It refers to increased anxiety brought on when people with little or no medical training go searching for answers to common medical complaints on the Web. The article compares cyberchondria with a phenomenon well known among second-year medical students, called "medical schoolitis." The researchers note that Web searchers' propensity to jump to awful conclusions is "basic human behavior that has been noted by research scientists for decades."

Comments

Even worse...

[Anonymous Coward]

Cyberchondria Wikia - A variant of Cyberchondria in which symptoms, causes and diseases change at random when suggested by other users

Re:Even worse...

[richlv]

the citation of new memes shocks me slightly only because old ones are lost too easily.
i mean, i don't have housemaid's knee !!!!!!!!!!11111~~~~

for the uninitiated :

I remember going to the British Museum one day to read up the treatment for some slight ailment of which I had a touch - hay fever, I fancy it was. I got down the book, and read all I came to read; and then, in an unthinking moment, I idly turned the leaves, and began to indolently study diseases, generally. I forget which was the first distemper I plunged into - some fearful, devastating scourge, I know - and, before I had glanced half down the list of "premonitory symptoms," it was borne in upon me that I had fairly got it.

I sat for awhile, frozen with horror; and then, in the listlessness of despair, I again turned over the pages. I came to typhoid fever - read the symptoms - discovered that I had typhoid fever, must have had it for months without knowing it - wondered what else I had got; turned up St. Vitus's Dance - found, as I expected, that I had that too, - began to get interested in my case, and determined to sift it to the bottom, and so started alphabetically - read up ague, and learnt that I was sickening for it, and that the acute stage would commence in about another fortnight. Bright's disease, I was relieved to find, I had only in a modified form, and, so far as that was concerned, I might live for years. Cholera I had, with severe complications; and diphtheria I seemed to have been born with. I plodded conscientiously through the twenty-six letters, and the only malady I could conclude I had not got was housemaid's knee.

I felt rather hurt about this at first; it seemed somehow to be a sort of slight. Why hadn't I got housemaid's knee? Why this invidious reservation? After a while, however, less grasping feelings prevailed. I reflected that I had every other known malady in the pharmacology, and I grew less selfish, and determined to do without housemaid's knee. Gout, in its most malignant stage, it would appear, had seized me without my being aware of it; and zymosis I had evidently been suffering with from boyhood. There were no more diseases after zymosis, so I concluded there was nothing else the matter with me.

I sat and pondered. I thought what an interesting case I must be from a medical point of view, what an acquisition I should be to a class! Students would have no need to "walk the hospitals," if they had me. I was a hospital in myself. All they need do would be to walk round me, and, after that, take their diploma.

all hail Jerome K. Jerome.
* if there really is somebody who has not read this book, do that tomorrow. citation from http://www.classicbookshelf.com/library/jerome_k_jerome/three_men_in_a_boat/0/

Same rules apply...

[Z80xxc!]

The problem might not be the use of the internet for information, so much as how people are going about getting and using that information. Just like one wouldn't trust some random person off the street or even some unknown doctor-like person in a white coat walking down the hall at the hospital, one can't blindly trust information on the internet. Getting a second opinion, (and a third, and a fourth) might help people to get a better idea of what's truly happening. They should still talk to a doctor, rather than relying solely on their internet diagnosis, but they might be able to at least get a general idea of what might be wrong. Using medical information on the web as one's only source is irresponsible; it should be common sense to get a balanced opinion and also to see a real medical professional.

Re:Same rules apply...

[westlake]

The problem might not be the use of the internet for information, so much as how people are going about getting and using that information.

The Microsoft research paper addresses this directly by comparing and contrasting how users responded to searches through MSN and MSN Health and Fitness, which searches a limited number of trusted sources for public health information. As you would expect, sites which are carefully vetted and never needlessly provocative or alarmist calm most fears.

Oh No...

[routerl]

This means I've just found another condition I might have by browsing the internet! Damn you cyberchondria!

I would disagree

[TubeSteak]

The researchers note that Web searchers' propensity to jump to awful conclusions is "basic human behavior that has been noted by research scientists for decades."

In my anecdotal and limited experience, I've noticed that it is certain personality types which have a "propensity to jump to awful conclusions".

They basically resort to hysterics over things they cannot control, even before they know how [thing] is going to end.

Conclusion...

[rodrigoandrade]

I haven't RTFA, per usual, but I'm sure the study concludes that it's a great idea to search the Internet to see if you have a terrible disease using Windows Live Search.

Re:Conclusion...

[westlake]

I'm sure the study concludes that it's a great idea to search the Internet to see if you have a terrible disease using Windows Live Search.

What the study actually found, of course, is that you are far better off using a search engine that links only to known-good sources for public health information.

The AMA. The American Cancer Society. The Center for Disease Control.

The geek shouldn't shrug off studies like these because they expose a serious problem with a general search engine like Google - and a search service that has perhaps become too much a marketing machine.

Re:Conclusion...

[girlintraining]

I haven't RTFA, per usual, but I'm sure the study concludes that it's a great idea to search the Internet to see if you have a terrible disease using Windows Live Search.

Hello there! I see you're looking for information on WHY DOES IT BURN WHEN I PEE?

Would you like to:
( ) Schedule a visit to Planned Parenthood
( ) Swear you'll use a condom from now on
( ) Order some monostat
( ) Call mom while crying on the toilet.

Thats why we built MEDgle

[ashdamle]

We (myself and a couple of doctors) started MEDgle (http://www.medgle.com/ ) specifically to help people understand the possible causes for their symptoms. Hopefully this will help combat cyberchondria by giving people reasonable causes, not the most dire. And as you stated, people should always talk with their health care provider. Any feedback is much appreciated. Cheers

Re:Thats why we built MEDgle

[girlintraining]

I seem to recall sometime in about 2000 there was a report that a computer program had been designed that asked a series of questions and provided a most likely diagnosis. It was apparently better at doing this than the doctors were by a small margin. The project was axed though after a huge outcry that it would put doctors out of business, couldn't be trusted because it couldn't be medically licensed, liability issues, etc. Has anything changed since then?

It seems like a good idea -- people punching in their symptoms and getting an answer about whether to take a trip to the ER (perhaps printout in hand) or not, and with people spending hours in waiting rooms only to find out they have the common cold or just bad menstral cramps, doesn't it make sense to give people the option of entering all their data into a computer first? If we tied such a database into the admissions system, they could show up with all their insurance, contact information, and symptoms list already available for the triage nurse. I'm not advocating taking a person and their clinical experience out of the loop, but certainly there's ways to use medical data to do better targeting. I've felt the same way about pharmaceuticals and wondered why there isn't a database to track adverse reactions to drugs on a per-patient basis... If someone's tried three different anti-depressants and had a poor response to them, maybe that particular reaction projects that Drug X would be 60% more likely to be effective than Drug Y. As it is, it's often drug rhoulette(sp?) until you find one that works.

 

"Browser, browser..."

[gyrogeerloose]

"...it hurts when I go like this!

Re:"Browser, browser..."

[gooman]

Well, then don't do that.

It's not new, just easier

[girlintraining]

The web hasn't made this behavior any less prevalent, it's just made it easier for people to fall into the trap. There are two camps in the medical community right now; Those who think that medical knowledge should be contained to those who are properly licensed, and those who think knowledge is power (but hope people use it responsibly). If this sounds familiar, it should -- our community (the technical and engineering disciplines) have had the same debate. We've all had our share of "technocondriacs" -- people who insist there's something wrong with their computer, even when we've scanned it with everything, reloaded the operating system, and defragged the drive five times... They somehow think it should run faster, or that there's a button somewhere to do X when there's never been X in that application. And no sniggering about literacy or operating system of choice here -- it happens to users of all backgrounds.

One example is pharmaceutical advertisements. Five years ago, using the words "Erectile Dysfunction" would have left people giggling on the floor. These days, it gets an eye roll and a remembrance of those commercials. It's undisputed some people have a problem rising to the challenge and may not have known there was a treatment for it, but the unintended consequence is a lot of people are taking medications that aren't medically necessary because of self-esteem problems, obesity, or a plethora of other causes that can be treated without a pill. Which of course leads to the "Solve everything with a pill" attitude that our society seems to enjoy, but that's a topic for another day.

I have to side with the idea that knowledge should be out there. My friend just got a horrible ear infection that resulted in extreme pain and puss coming out of her ear because the doctor misdiagnosed it as "swimmers ear"; She needed strong antibiotics and he prescribed drops, and so for three days she's been laid out on a couch screaming and crying every few minutes. She only went back to ER after researching out what else it could be besides swimmers ear, and an ear infection turned up -- there was no difference in the symptoms list, except the pain level. And her mother is a registered nurse who works in a hospital -- she didn't find anything wrong with the diagnosis either. My friend's access to the internet may very well have just saved her some hearing loss this week!

So which side is right? Both. And neither.

Re:It's not new, just easier

[Emperor Zombie]

My friend just got a horrible ear infection that resulted in extreme pain and puss coming out of her ear because the doctor misdiagnosed it as "swimmers ear"

I imagine that having a cat crawl out of one's ear would be quite painful.

Re:It's not new, just easier

[lxs]

but the unintended consequence is a lot of people are taking medications that aren't medically necessary

What makes you think this is an unintended consequence?

Zebra syndrome

[st0rmshad0w]

Yeah this sounds like classic zebra syndrome.

Zebra Syndrome is immediately jumping to the rare possibility when given a piece of evidence. When you hear hoofbeats you should think "horses", not zebras.

Someone gets an ache or pain and hops on Google and suddenly they have Schistosomiasis or something else equally as absurd.

Personal experience

[bsDaemon]

A few years ago, I woke up with a terrible pain in my lower abdomen. I did a quick Google search and matched all the symptoms of appendicitis, so I got my parents to take me to the hospital.

The first doctor also thought that I had it and scheduled me for surgery. However, the surgeon said to wait for a while.

Turns out that it wasn't appendicitis and that I just had to fart really, really, really badly. Of course, 24hrs in the hospital to figure it out probably makes it the most expensive fart ever -- something around $5,000.

So yes, this "cyberchondria" really is a problem.

Re:Personal experience

[BorgDrone]

The first doctor also thought that I had it and scheduled me for surgery. However, the surgeon said to wait for a while.

That's the thing that bugs me the most about the whole medical pseudo-science. They just try something and hope it works, they never actually try to get to the bottom of it and find the real problem. High blood pressure ? Here, have some medication that artificially lowers it. They don't bother to find out WHY it's high and correct that.

It's a good thing these guys didn't go into the programming business because I bet they would be awful at debugging.

Mirror, mirror...

[SrWebDeveloper]

So I looked up "Porn Addict" on WebMD, you know - to do research for a paper I'm writing - and got to a page there which included a brief Flash video of me behind my keyboard, typing in "Porn Addict" on WebMD. Jesus, this technology is AMAZING.

Re:hm

[rhyder128k]

This was the first thing that leapt to my mind as well.

Basic scenario: Patient is able to spend six or seven hours carefully searching message boards and the web for something exactly matches their symptoms. In all fairness, patients aren't always brilliant at specifying their symptoms clearly and exhaustively. Next day, patient goes to see doctor and points out something that the doctor has missed. Doctor thinks, "Who the hell does this guy think he is? I'm God!". Patient gets a telling off for causing a nasty case of cognitive dissonance in the mind of the doctor.

I think that things are perhaps worse in the UK as we have a state healthcare system. As a result, Doctors don't always treat patients with the same respect that they would a paying customer. I've had some private dental care, and the attitude was like night and day. In contrast, a doctor once told me off for having read the the little leaflet that came inside a packet of pills.

also called med student hyperchondria

[peter303]

The condition is common in med students who seem to get sick with whatever conditions they've recently studied.

It Has A Medical Counterpart, Too

[Wandering Wombat]

Because doctors know that people can often search for stuff like this on the internet, many medical professionals will IMMEDIATE ignore any and all such comments or queries. I've come to three doctors now with information I found in medical journals and on the internet which match my symptoms (migraines, blackouts, audio and visual hallucinations, seizures, fugue states... basically, every facet of certain kinds of epilepsy). All three doctors have told me, in various ways, that since I found this information myself, it's clearly NOT what I have.

I continue to have blackouts and seizures, and continue to go untreated, because unless I have a seizure in my doctor's office, he'll just assume I'm trying to get medication out of him.

I call it "Smug Superioritis".

critical thinking

[bcrowell]

Most people -- including, I suspect, doctors -- have trouble with critical thinking, and one area that tends to be a particular problem is critical thinking about probabilities and cause-and-effect relationships. I'm a community college professor in California, and recently there was a big state-wide earthquake drill, which they made into sort of a media event. The day before, I heard my students before class talking about it. "There's gonna be an earthquake tomorrow at 10 o'clock." "Huh? They can't predict earthquakes, can they?" "I heard it on the news." "Really?" Most people just accept information without thinking about it critically. Obama won't say the pledge of allegiance? Oh, okay.

I don't think medicine is different from any other field where people gather their own information, and I don't think health-care professionals are always much better than anyone else at this kind of thing. For example, I had a certain foot problem, and my G.P. prescribed physical therapy. One of the things the physical therapist did was to use ultrasound on my feet (therapeutic ultrasound, not ultrasound for imaging). I checked on the web later, and it turned out that the only controlled scientific studies on the topic had shown that ultrasound had no effect on my condition.

I think it's telling that "evidence-based medicine" is a term that even needs to be used. If it's not evidence-based, what's it based on? Wishful thinking? Voodoo? The placebo effect?

Cyberchondria and self diagnosis are good things

[syousef]

If you conclude the worst, and you have the disease you might go and seek medical help sooner. If it turns out you're right, you might catch your disease in time to have something about it.

The other thing to note is that good medical care, even in the "developed" world is increasingly becoming hard to find. Doctors do long hours and are under immense pressure and the best and brightest sren't always attracted to the field, and when they are they often feel entitled to gouge the people they treat while providing sub-standard care. That's not to say there are no good doctors, just that there are surprisingly few. A good doctor will save you but a bad one will get you killed.

I've had friends and loved ones prescribed medications that almost killed them (and had dosage increased by 3 separate doctors in one case, as one of the contraindications got worse and worse!). I've seen routine things completely misdiagnosed. I've seen a woman with maternal asthma barely able to breath and hacking up huge amounts of flem dismissed as a fat hypochondriac. I've seen shoulder dislocations misdiagnosed as swelling - something that commonly happens resulting in long term should instability. (Don't believe me? Check out the literature on posterior shoulder dislocations and include "avoiding a missed diagnosis" in your search).

I've also been told I should have my ankle fused by 2 specialists. According to them I should no longer be walking, but when I looked up the long term prospects - after 3 months off my feet completely only a 70-80% chance of success (in which case repeat once then chop off foot) I can expect a couple of years recovering and about 6-7 years before severe ankle arthritis hits. I have gone for more conservative treatment - staying off the ankle - and while there is still pain I walk a couple of kilometers a day and haven't had to sacrifice my career. I may still have to have the surgery but these surgeons didn't even suggest TRYING anything conservative.

IF you use the internet appropriately instead of looking up ever sneeze and cough and assumign you are dying, the net is a wonderful thing. Anyone who says otherwise has a vested interest in keeping the information from you.

The obvious joke...

[MessyBlob]

I think I have Cyberchondria...