Doctors Turn To the Web For Disease Tracking

schliz writes "US researchers believe that data from sources including discussion forums and news websites can help them better cope with outbreaks of disease. The team from the Children's Hospital Boston and Harvard Medical School has launched an automated data-gathering system called HealthMap to collate, organize and disseminate this online intelligence. The team argues that online information can be hugely valuable to medical professionals by helping with early event detection. The data can also support 'situational awareness' by providing current and local information about outbreaks."

Comments

Responses?

[catbertscousin]

So, if everyone on some large forum started talking about, say, measles, would the CDC show up at the server room and demand the names of the users so they can "contain the outbreak"?

Re:Responses?

[geekoid]

Your stretch at paranoia is unwanted.

Re:Responses?

[philspear]

Measles? Probably not.

Ebola or smallpox yes.

I wiki'd smallpox and found out that in 2004, a librarian found an envelope from the civil war era marked "smallpox scabs" and the CDC showed up pretty quickly. So that shows 2 things
1. The CDC would show up if you were bragging about having smallpox
2. There were some sickos during the civil war. Saving smallpox scabs in an envelope?

Re:Responses?

[zcnyu]

Scary! But not too far-fetched. For measles, no. But for H51B? Yes. Remember the AIDS scare from the 80's? Apparently there was a blacklist somewhere in the halls of D.C. at the time. The technology now makes it far easier.

Re:Responses?

[Anonymous Coward]

Scary! But not too far-fetched. For measles, no. But for H51B? Yes. Remember the AIDS scare from the 80's? Apparently there was a blacklist somewhere in the halls of D.C. at the time. The technology now makes it far easier.

H51B? What's that, the dreaded Outsourcing Influenza?

Re:Responses?

[StikyPad]

How is that substantially different than keeping a jar of nail clippings?

Oh, you uh.. don't do that? Yeah.. me either. Sickos!

Re:Responses?

[spasm]

"2. There were some sickos during the civil war. Saving smallpox scabs in an envelope?"

Grinding up smallpox scabs and jabbing them into your skin used to be how you inoculated people for smallpox before the cowpox vaccination was invented/discovered. So collecting the scabs from people who had recently had it was a pretty common practice.

Who'd of thunk

[CranberryKing]

Wow. They are using the world wide web for what it was designed for.

Re:Who'd of thunk

[philspear]

Porn?

Eww... not diseases in porn I hope.

I want to cancel my subscription to the internet immediately if that's the case.

Re:Who'd of thunk

[MillionthMonkey]

At the clinic I go to, they have a browser set up in each office. (And it's password protected, so you can't surf while you're waiting in the room for a half hour.) The neurologist is always whirling around and Googling stuff during the appointment. If he suggests a drug and I've heard people bitching about its side effects, I tell him and he does a quick Google search before suggesting something else. My wife's doctor, OTOH, disregards her own complaints of drug side effects that she's experiencing, and refuses to change the prescription. "I've never heard of that." They could open a five minute med school where they give you a 3G wireless Internet card, a DEA number, and then spend four minutes teaching you how to have an attitude.

Pandemics

[Stooshie]

http://www.ted.com/index.php/talks/larry_brilliant_wants_to_stop_pandemics.html

The above talk is 26 minutes long and talks about using web activity monitoring to find possible outbreaks of pandemics before WHO.

Re:Pandemics

[zappepcs]

Wouldn't Google Trends do exactly this? By carefully crafting a set of queries, you should be able to see what country is looking the most of any number of disease related topics, including symptoms. I'm sure that some fine tuning of the algorithms would help, but it does not require personal information to find out what disease is of concern to local populations.

Additionally, I'd like to see something about health information available on the Internet. I'd like to know what the incidence of sickness is during flu season and cold season etc. I don't care who has it, or how many times, but I would like to know what percentage of the local population is currently sick, what percentage of the sick are elderly/feeble/children/women/men etc.

This is like a health weather report, and I think it would be most useful, despite the danger of collecting such information, and the problems inherent in trying to not track personal information tied to that health 'weather'.

Re:Pandemics

[somersault]

Dr Who has a time machine. You can't find out any major world news before he does.

It's got a ways to go...

[Madball]

Actual site is http://www.healthmap.org/

Interestingly enough, the US-Country Tag is affected by a google feed from www.healthnews.com, which is about Hand Foot Mouth Disease decrease in China, Hong Kong, and Singapore?

After playing around in the site for a while, I doubt its usefulness, but IANAD.

Data mining headaches

[zcnyu]

This sounds like a reasonable solution. However I see some hurdles:
1. random discussions that don't provide a lot of detail or relevant data
2. discussions about historical events that generate lots of noise
3. as mentioned previously, issues of privacy

If someone is complaining about random symptoms on a discussion board, then receive a "complimentary" drug package in the mail from some big pharma company, it would just be too creepy.

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NEMSIS does some of this nationally

[taliesinangelus]

For those of you who may be considering a trip in an ambulance or other emergency vehicle, I suggest viewing this site: http://www.nemsis.org/ All EMS data in several states is already being collected. That includes diagnosis, treatment and disposition of patients. The data is then mined for statistical analysis for such activities as disease tracking and symptom trending.

Web Doctors *with* caveats

[Maxo-Texas]

Over the last three years, I have found the web to be superior to my doctors' knowledge.
I have to gently ask them questions to guide them to thinking about the information or looking it up.
I get the definite impression that the constraints insurance companies put on them or the stream of 16 patients a day causes them to overlook certain symptoms unless you highlight them.

You have to be very careful about the information tho because
a) some people are goofy.
b) as medical companies are becoming aware of this they are putting propaganda out.
c) you need to be aware if you are reasonable or a hypocondriac. I'm reasonable so this works. A person who is a hypocondriac would probably just make themselves fearful of a lot of stuff.

Flu

[zmooc]

In the Netherlands we've had something slightly related for years now: the "flu tracker". http://www.degrotegriepmeting.nl/

Currently there's no flu epidemic going on, but when there is, the maps shows really well how it spreads throughout the country.

Re:Web Doctors *with* caveats

[ibanezist00]

Over the last three years, I have found the web to be superior to my doctors' knowledge.

I'd be very, very careful about the medical information you find on the web. A lot of it is antiquated and/or incorrect. I've had many doctors advise a lot of people about this. Example, my father got state-of-the-art prostate cancer treatment (it was minor, thank [deity of choice])that wasn't even documented on the web yet.

Then again, who knows, they could be putting up a front because of what insurance and drug companies have told them...

Statisticians have a saying...

[Bazman]

"The plural of 'anecdote' is not 'data'." It's even worse when those anecdotes are culled from miscellaneous websites, unreliably geocoded, and possibly multiply reported.

Re:Statisticians have a saying...

[bob_calder]

It filters out noise. What you are thinking about doesn't happen because they thought of it back when the first one was written in Canada during the SARS respiratory outbreak that started in a hotel in Hong Kong. It scraped specific chinese websites and provided valuable data for the public health docs. They were able to confine it quickly as a result.

Re:Waving shiny objects

[maxume]

That's the best euphemism I have ever heard for hitting someone upside the head with an aluminum baseball bat.

Re:Web Doctors *with* caveats

[a_claudiu]

The web saved the life of my first kid.

Seven years ago, one morning me and my wife rejoiced when pregnancy test turned positive. I left to work and my wife scheduled an appointment in a recently created private cabinet of a doctor recommended by my mother in law. (I'm from an ex-communist country and by that time this was new and considered better than public health care).

At noon my wife is calling me, crying on the phone telling me that we need to plan an abortion. She was to the consultation and she remembered that had a lungs radiography one week before and she asked what are the risks if any for the kid. The doctor said nobody knows for sure the risks of radiation on fetus but in this case she will recommend an abortion (it was "soon" after the communist years when the abortion was prohibited and most of her customers just wanted an abortion). She even planned an abortion for the next week.

When I heard about this I started to search desperate over the internet about radiation and pregnancy and found the amount of radiation (especially lungs) to be negligible for affecting the pregnancy. I've gone to place where the radiography was made to find the type of machine (an old russian one) to see if was having problems or the possibility of malfunctioning.

I gone to her together with my wife with the printed pages trying to find out if I understood wrong the information (I'm no doctor) and evaluate the risks of pregnancy. She started to babble about her experience and if we decide to have the kid is our responsibility not her.

After this we gone to another doctor (one teaching at university) that told us in short: the other common risks of pregnancy are much bigger than a simple radiography and if we really want a kid we should go for it.

In the end we had the kid, a boy, no problems at all, at 7 years old is promising to become a geek also. Now that I remember it I want to go to that doctor again to show her the kid she wanted to kill because of her ignorance. If I remember well the amount of radiation for two lungs radiography was 0.2 rads (less than a tooth radiography) when the dose considered risky for a fetus was 2 rads. Also the price of a permanent internet connection of 36Kbit for companies was costing 100$/month.

Just one problem...

[Vornzog]

There is just one problem with this - getting timely, reliable data.

I work with flu, and the epidemiologists I know would love to have a system that could "facilitate early outbreak detection, increase public awareness of outbreaks prior to formal recognition, and provide an integrated and contextualised view of global health information."

A few sites that should help do this for flu are coming online, but the biggest impediment is getting timely, reliable, geo-tagged data. The local physicians know that an outbreak is starting, but it takes a while for samples to filter up to the state and country levels, be reliably analyzed, and then be uploaded to a tracking website.

While better websites will help in this process, the bottleneck occurs much earlier in the process. Samples come trickling in from third-world countries months after they were collected (or sometimes after the flu season is over!) and they might have the name of a city associated with them. That's not much help when you have to pick next season's vaccine halfway through this season so that it'll be ready in time.

And don't think that asking the local physicians to use a website is going to help - not for flu or any other disease. Most of the time, you are likely to get a hand-written sheet, partially filled out, with five or six columns of basic information for each sample. They don't have time to do any more then that.

Sure, the pandemic threats get a bit more attention, but the seasonal stuff still kills hundreds of thousands of people every year. You want to help? Start with those third-world clinics. For most diseases, the CDC and WHO still have to get people out on location to do good surveillance, and a website just isn't going to change that.

Doctors need to use the web, too

[KWTm]

You pointed out some caveats, and I agree that you can't just make a blanket statement about which is better, the Web or doctors. It looks like the Web has been able to help you more than your particular doctors. This would especially be the case if the doctors are not computer-savvy enough to look up things on the web.

In general, I tend to enjoy my net-savvy patients more. They come prepared with background information, and they already have general knowledge about what I tell them. If they surprise me with something I'm not that familiar with (e.g "Hey, doc, what do you know about Horrible Disease X?" "Well, er, let me think ..." "Anyway, I looked it up already, and it says that you treat it with Ugali-bugali-mycin. Isn't that right?"), then I will simply admit that I don't know, and that I would like a chance to look it up as well. You do have to be humble, and not bristle at the concept that the patient might know more than you --there's no shame in that, especially if it's not your specialty.

I, too, will use the web to look stuff up. (I generally don't do it in the patient room because, although our clinic does have computers installed there, they run IE, and I'm much more adept at the Firefox that I've secretly install in my own office desktop, complete with NoScript and Adblock.) I will tell the patient to wait while I look it up, or even that I want a few days to check, and phone them back.

I find that, all things being equal, doctors have the advantage over patients in checking for info on the Web. (No surprise there.) Not only do I have access to websites not available to the general public (e.g. my clinic pays for access to Up-To-Date, Medline, etc.), but even on web sites that my patients can access, I am better able to zero in on the needed info, pass it through my Filter of Common Sense, and interpret it in the context of the patient. Where you have the patient being superior is where the patient has done the homework, and the doctor has note.

So, in general, if the doctor keeps an open mind, s/he can benefit from patients who educate themselves on the Internet. My general advice to patients is also to keep an open mind --it could very well be that the web info is inaccurate and your doctor is right.