My name is danah boyd and I'm a Principal Researcher at Microsoft Research and the founder/president of Data & Society. Buzzwords in my world include: privacy, context, youth culture, social media, big data. I use this blog to express random thoughts about whatever I'm thinking.

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seeking a productive relationship with medicine and the Internet

Ever since I left Beijing, I’ve felt like hell. A myriad of odd and seemingly disconnected symptoms have plagued me all month. My least favorite is the persistent cough that tastes like iron that makes me think I’m coughing up my lungs for realz. I find the sneezing to be mostly entertaining, although 14+ sessions a day of 3+ sneezes each has gotten a little overwhelming, even if said sneezes are awfully cute. Most of the others are just odd. None of them are worrying, except in aggregate. I feel like my body is rebelling against its very existence. Unfortunately, the seriousness of the odd symptoms took a turn for the worse this weekend. The combination of dizziness, nausea, and loss of vision forced me to leave a geek campout that I had been looking forward to for quite some time. Luckily, good friends were there to worry about me and help me get back to LA.

The Internet is dangerous when you have a disparate set of odd symptoms. There’s good reason to believe that I have mono, rare allergies, and a wide array of different cancers. Needless to say, I don’t trust the Internet to diagnose me. So I set about trying to find a way to get a doctor to help me. For once, I have real health insurance. (Of course, that doesn’t help so much when you don’t have a primary care physician because getting an appointment is a bitch. And goddess knows that going to the ER in LA sounds like the worst idea possible.) I ended up going to a university clinic where the doctor listened to my symptoms, decided that I must have migraine auras, wrote me a prescription and whisked me out of there before I had time to process what was said. Not a single test, unless you count the reflex one. I paid an absurd price for the meds and then went home to read about them on the Internet.

What I found bothered me. Oddly, the list of symptoms for migraine auras pretty much matched up with the list of side effects for the medicine. What it supposedly treats are also what it might cause. While headaches are not a requirement for migraine auras, headache-free migraines are rare and usually involve a history of related migraines. I don’t have these problems. So I’m sitting here, reading about a diagnosis that doesn’t seem right and reading about a medicine that seems to cause more problems than it helps. Besides, the instructions indicate to take the medicine when I have a headache. And furthermore, what does this have to do with my iron-tasting cough?

While the Internet is not diagnosing me, it is making me call into question the supposed diagnosis and treatment. I feel both empowered and disempowered by this source of information. Or rather, what makes me feel disempowered is the lack of a way of integrating this information into a productive move towards wellness. If I take the meds, I’m subjecting my body to chemicals that seem unnecessary and irrelevant. If I don’t, I’ve just wasted a day and am back to square one in feeling shitty with no path forward. Part of me wants to call the doctor, but I didn’t like the dynamic in our meeting so I can’t imagine a phone one where I come bearing Internet information. Instead, I will see another doctor.

All of this makes me wonder… isn’t there a better way to integrate information and medicine in a productive manner? I mean, I’ve read Birth of the Clinic and I know all about the power relations involved in medicine, but can’t we undo that somehow? I know that the doctors don’t know everything but I hate being treated like an idiot in the clinic and feeling like a criminal when I investigate my diagnosis/treatment and, implicitly, call into question the authority and power of the doctor. All I want is to be healthy and to know why my body feels like crap. What will it take to make medicine a collaborative endeavor? I’ve known some awesome doctors who are more collaborative over the years, but why can’t that be the norm? And why can’t there be a better way to match doctors and patients than geographic lookups on insurance websites? How can we get Yelp-like descriptions of doctors rather than the RateMyProfessor-esque ratings that do exist? What’s it going to take for the walls between patients and doctors to come down?

Yes, I’m ranting. I need something to do with this pent-up ickiness. Besides, ranting here also serves to explain why I’m dreadfully behind in responding to everything, especially anything that requires thinking. Sorry about that. My brain is moosh. I just hope that my angry body isn’t doing permanent damage on my mooshy brain.

PS: I can’t wait to be healthy and post-dissertation so my blog stops looking so lame.

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12 comments to seeking a productive relationship with medicine and the Internet

  • Greg

    Dana — I realize that you may not be seeking actual advice here, as much as you are wanting to initiate discussion about how information is dispensed in the Western medical paradigm, but…..

    Have you considered acupuncture/Chinese Medicine? If you do not already know this, Chinese Medicine is really good at integrating and discerning patterns of symptoms that don’t easily fall into the grid of the Western bio-medical diagnostic model. Acupuncturists also typically excel in the kind of patient-practitioner collaboration you find lacking in your experience with your typical medical doctor. (This will be more true with a native English-speaking, American born acupuncturist than with an actual Chinese-born acupuncturist, but the Chinese-born acupuncturists obviously have their strengths as well.)

    Anyway, I hope this info is helpful.

  • Since you’re still in the LA area, yes?, I’d like to recommend GP Dr. Heidi Wu on La Cienega. Her office is in the medical building just next to the Lawry’s Steak House.

    She runs on time, and actually takes the time to listen to you — she also reminds me of a sorority girl (I think it’s her energy) so there’s no intimidation factor when you want to ask questions. I had no health insurance at the time of my last visit, so she discounted her rates for me, and I don’t hear of doctors doing that often.

  • I’m sorry to hear that you’re not well. I hope you’ll get well very soon. Having said that this is one example where I’m quite happy that I don’t live in the US. Your health care system seems to be in tatters.

    In Denmark (small European country) you cannot move to a city without having a personal MD. It’s a prerequisite for even getting a health care card issues – they simply need the name of your doctor to issue it. So you are presented with a list of the available doctors, and you call a few of them. Rule of thumb is that the longer the waitin list for a doctor, the better he or she is. If you find a doctor, where you can easily get an appointment for something not life-threatening, you should think twice.

    With regards to the internet, its definately a blessing. I have a good friend who used the internet, access to information and communication to succesfully battle an ugly cancer disease. Everytime he went to see the scores of doctors involved in his treatment, he was more into his own medical history, symptoms, possible treatments etc. than they were, and on some occasions he was able to correct them. He’s convinced to this day that that was a major part in curing him.

  • Mads Kristensen: The Judicious use of price increases deals with lines quite effectively, even for superstars.

    Apophenia:

    The problem you are running into is due in large part to a lack of understanding of how medicine works in a large segment of society. Many people have a deeply held superstitious belief that going to the doctor and getting pills will cure them, regardless of the truth of the matter.

    The problem is that doctors have no way of knowing ahead of time who these people are, so they generally default to assuming that everyone has this belief (it’s a cost effective strategy) in order to avoid offending anyone. Additionally, some doctors are probably a bit self conscious about telling patients that “there’s nothing I can do for you” and still charging them.

    While it might be possible to overcome these hurdles via better information, I’m betting not – especially since the first aspect of the problem is that a large segment of society is not rational (and hence, you should not take their advice). My guess is that the problem will be solved (to the extent that it is ever solved) by operations like Minute Clinic which are on their way to becoming the first line of patient screening – which should make it easier to trust the word of a Doctor, if you make it to that far in the process.

  • Liz

    Doctors seem to be taught that they have to be right and can’t make mistakes, and they also have a strong interest in not admitting to mistakes when they make them. They’re taught that it’s best to give people very limited information about what might be wrong with them and what tests are being done. To most doctors, for a patient to take notes, or have notes, or know anything at all about their condition, it’s a big warning sign. I wonder too about the effect of the way doctors are trained, with sleep deprivation, cruelty, and other torture techniques built into the educational system. I think that doctors are trained to have the attitudes of torturers. There is something deeply wrong with their training and with the model of authority they are taught to assume.

    The nicer ones explain what they’re thinking, look things up in front of you, and give you information that’s empowering so that you can try to make sensible decisions. They’re a minority in the profession. Most doctors don’t think people are intelligent enough to make rational decisions. Sounds like you agree.

    They also don’t have *time* to be nice, to listen, or to explain, since they are under pressure to see more and more patients per day.

    They don’t listen on first pass to more than one set of symptoms. If you go in with a sore knee, and bronchitis, and dizziness, they will only hear and treat and test about one thing. And, presenting with an array of vague things wrong without having weird blood pressure, a fever, or some other giant obvious measureable physical symptom they can see, will just get you put into the category of “crazy hypochondriac who needs to Avoid Stress”.

    For any significant problem, you can expect that you will be dismissed quickly with some fairly random diagnosis and medicine, tell you to stop smoking and exercise more, and that’s it. If you never come back, then as far as they’re concerned, they were right. They don’t go full into trying to figure out a problem until you persist in going back and complaining about it over time. A lot of common problems clear up spontaneously so people believe the medicine helped.

    So if I have any advice for you, it’s this — keep reading, take notes now and then so you know when you had really bothersome symptoms and what they were. And go back to a doctor, the same one, over time, if you have some problem that persists. (Sounds like your first pick sucked, though.)

    I am a fan of the simple flow chart books like “Take Care of Yourself” that give a decision tree useful for anyone, so you know when to call your doctor and check something out, when to go to the hospital right now, and when there’s quite likely nothing to worry about and you can wait it out. We should have that kind of book as part of basic science and biology education at the high school level. Then, people could make more rational decisions.

  • Liz

    Oh, and I’ve often wondered this:

    “How can we get Yelp-like descriptions of doctors rather than the RateMyProfessor-esque ratings that do exist? ”

    Would they sue patients? Is there some legal stricture? I think I’ve seen doctors rated on Yelp and in fact, have reviewed some of mine there. It would be nice to see that kind of review system grow on a web site like Yelp with a reasonably good interface and design.

  • danah, I was just out at dinner last week with my cousins who are both radiologists at Columbia Hospital. They are facing an unusual problem: their patients come to them and tell them that they read so and so on the internet and hence, their diagnosis must be right. My cousins initially were a little flummoxed about how to respond to such comments. In a few cases, a patient or two also undermined the doctor’s authority. Ofcourse, now they’ve learned to assert themselves and are infact, telling the patients to not consult the internet and instead, go directly to a doctor. (they are radiologists, so their patients usually have serious problems and what a scary place the internet can be for someone in such a helpless situation!)

    Anyways, I hope you feel better.

    (Also, sorry I didn’t respond sooner to your comment on my blog about SNS. But yes, it did answer all my questions. Thanks!)

  • Jinal – I don’t actually think that this is the best approach though. I think that the doctors should ask the patients to bring in what they read on the Internet and discuss why they think that this is inaccurate. Help educate the patient rather than telling them that doctor authority is 100% right and internet authority is 100% wrong.

    Every doctor I’ve ever known personally knows that medicine is more of an art than a science. Doctors take what they hear and compare it to all of the possibilities. They run tests to get a better sense of what’s going on and they try to make accurate assessments. But they are also sometimes wrong. I’d much rather see a doctor list off all of the possibilities that they’re considering as potential diagnoses and articulate why they think that those diagnoses aren’t right than just say that the other possibilities simply don’t exist.

  • Tex

    You and I agree on quite a bit, including a general disklike for going to the doctor…if I had to guess, it sounds like you’ve done what I’ve done many a time, which is ignore one problem (a bitch of a cough) only to finally go to the doctor when a second, unrelated problem comes along (bad food) because suddenly it seems like I’m dying of some freakish tropical disease. (For the record, the first was walking pneumonia which was too far gone for them to do anything for – my friend who went to the doctor within a couple of days got some nice pills and was all better in under a week).

    But I can’t agree that the walls between doctor and patient should be totally removed. Though not all walls are necessary, there are certain ones that I cringe to see no longer exist. Say the wall between a student and a professor that would have previously kept the student from calling the professor’s home phone number at 2.30 in the morning because the student doesn’t like the reading assigned and feels it important to let the prof know.

    In other words, I certainly agree with you that condescension from docs is inappropriate. But a lack of respect from the patient is no better. Going in and saying, “I think I might have this problem,” is fine. Politely asking, “How did you make this diagnose?” is fine. And answering both those questions civilly is fine. But doing the doctors’ job for them and arguing with their decisions is just as much bullshit as them blowing a person off who is legitimately (and politely) concerned about understanding their health. But “collaborative?” Fuck no! I will never agree with you on this one. If I’ve dragged my sorry ass into the doctor it’s probably because I’m half dead and at that point I think a person’s got to be awfully fucking arrogant, crazy, or stupid to tell the doctor how it works. Even if the doctor’s an incompetent moron, they’re still only half the incompetent moron that I am.

  • Tex

    Still sticking by my “half the incompetent moron” theory, you nonetheless might take a look at some of the work Karen Eden has done in Medical Informatics. It involves “collaborative” decision making between patient and doctor (in this case, I am thinking of an interface she’s tested that gets patient preferences and feelings about various issues surrounding birth and then assists the patient in deciding between having a c-section or natural birth).

  • Steve

    danah,

    Several thoughts here,

    (1) If you haven’t already, I would suggest obtaining a cheap vitamin C supplement and taking a gram or two a day for a few days. It may not help, but it is very unlikely to hurt, and by stimulating your body’s natural defenses it may help you heal yourself. Similar remarks could apply to a B Complex supplement, if you don’t take one already.

    (2) There’s an economic dimension to all this. Doctors could work more productively with patients if they had more time to spend. Ideally, a doctor should spend some relaxed quality time with the patient, maybe over a cup of coffee, getting to know them as a person, and making intellectual contact around the shared problem of the condition – about which the poatient has the best experience and the doctor has the needed expertise and social authority.

    Now, to break away from the above paragraph of speculative fiction, let’s note that in *our* universe this is not how medicine is practiced.
    (Except perhaps in some shamanic traditions?) Why not? Because economic constraints dramatically reduce the time a doctor and a patient can spend together. The underlying causes of this are the subject of a burning national debate about which books have been written. But the bottom line is that if we want good quality care, we as a society must decide to devote the necessary resources to medical care, and must become prosperous enough (in rreal physical-economic terms) to afford that allocation. Anything else is just playing games.

    (3) That being said, as long as we suffer under the present circumstances, try to be persistent and clever and find the doctor who siims upstream and bucks the trends abd sacrifices to provide quality care for their patients. In the past, I have found reasonably good results by looking at DOs rather than MDs. and at people who chose to serve an economically poorer clientle. (Not to be confused with people who serve the poor because they are only marginally competent and can’t get a better position). And, admittedly, I was not facing the issue of a difficult diagnosis.

    It’s a little bit like finding a trustworthy mechanic. Just keep asking and looking.

    At least you are insured. That will be a big advantage.

    Good luck,
    -Steve

  • zipthwung

    I could share a medical story – where the symptoms in a relative could have been diagnosed if taken seriously. Follow the breadcrumbs.

    If you have neck problems – go for pinched nerves, viruses, whatever.

    You went to Beijing. Look at smog, mold spores, pollen, avian flu.
    (test for allergies?)

    Anecdotally I know pollen was bad this year – I had allergic reactions that far exceeded anything I’ve ever had. Was it the hide-a-bed? Mold spores? Pollen?

    Thew scientific method – process of elimination – is what works.
    Don’t get caught by magical thinking. And if a symptom goes away, don’t necessarily associate that with some random apophenia. I mean I do, but I’m nuts.

    I’m also calling into question and problematizing your posture. All that academic speech particulate in the air is shaping the way you think – and maybe even damaging you health……