Posts about medicine

Dr. Wow

Thanks to links to the post below on medicine as information, I heard from Dr. Jay Parkinson, who is starting an incredible company and platform called HelloHealth to reform the relationship between doctor and patient around (a) the patient and (b) conversation. I’ll let him tell you about it (from Poptech):


Jay Parkinson at Pop!Tech from Jay Parkinson on Vimeo.

As the man says at the end, it’s enough to make you wish you lived in Brooklyn to take advantage of the service. I don’t want to jinx myself, but I almost want to get sniffles to try it out.

Medicine is information

John Naughton has a good Observer (UK) column today about patients getting health information on the internet.

The medical profession is, to put it mildly, not over the moon. The more literate practitioners shake their heads and quote Mark Twain’s adage: ‘Be careful about reading health books. You may die of a misprint.’ But others are more righteous and wax indignant about what they see as the errors and misinformation peddled by many sites that purport to deal with health issues.

It’s tempting to regard this as the blustering of an elite threatened with the kind of ‘disintermediation’ that has wiped out travel agents. But quite a few studies suggest that the quality of web health information is pretty variable. For instance, several estimate that about 5 per cent of sites dealing with cancer are inaccurate, while those dealing with nutrition (45 per cent inaccurate) and nutrition (89 per cent) are especially suspect.

In my book, I argue that – as with other apparent problems in industries – there is opportunity here. Doctors should act as curators, selecting the best information for their patients and making sure they are better informed. I had this discussion with some doctors at a lunch a year ago:

What if they created resource sites? What if they blogged to keep patients informed and up-to-date—and also linked themselves with a larger community of doctors working on the same conditions? If their patients got more of the right information, would that make them better patients? A bit grudgingly, the doctors accepted the notion. I’ve debated my prescriptions and treatments for afib with my doctor and what I really want from him is data and information about my choices to make better decisions together. I’m no citizen cardiologist, but it is my heart.

I’ve also been amazed at the power of PatientsLikeMe, which enables a community of patients to share their qualitative and quantitative data, which is valuable to fellow patients and to doctors.

Medicine is a science of information. The more information that is more openly available, the more we need help sorting good from bad, true, but the more we will all benefit. This requires less control – and more value added – from the still-closed priesthood of medicine. As with other professions and industries, this is a wrenching change but doctors, too, will soon hear demands to open up.

Dr. Podcast

Harvard Medical School is putting its lectures on podcasts. And here’s a list of medical podcasts.

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Here‘s a medical article arguing that sleep apnea and snoring can be treated by learning to play the didgeridoo — the big pipe you blow on that makes sounds like, well, snoring.

Dr. Blog

I debated whether to blog about my afib because it is (a) self-indulgent, (b) off-topic, (c) boring to most people, and (d) makes me sound like I’m in the old folks’ home already. But this is my blog and blogs are about life and so I did it and I’m glad I did, for kind folks not only gave me nice wishes and good information, but interesting conversations ensued that may actually lead to something. I got email from Bill Evslin, the Hawaiian doctor-brother of my blogging friend and online author Tom Evslin. Bill is in the afib frat but because he’s a doctor, he also has good advice — or actually, smart questions. In our three-way email exchange, the amazing Evslins wondered….

Wouldn’t there be value in getting the population of fibrillation patients to share their experiences online? The disorder is mysterious in many ways and perhaps the anecdotal testimony of these patients would help focus attention on causes and possibly effective treatment or might simply inspire those who are working on the problem. Tom started the bidding with that question. Bill responded in email:

I believe the collected wisdom of the patients themselves could shed some light on factors which cause AF and methods of treatment which have helped to ameliorate the condition. It is a very frustrating condition for physicians and patients as none of our preventive or curative treatments are good enough. What makes it ripe for research is the intermittent nature of [the condition]…

I am also quite interested in anecdotes concerning the people who got better. Science generally prides itself on staying away from anecdotes, but a large number of similar stories can push scientific borders….

My suggestion is to create a simple questionnaire that could be used to tabulate certain types of results such as, do you think certain foods triggered your symptoms? And then open ended questions concerning causes and possible cures.

I came back with this:

A survey is good and needed. But I also wonder whether there is value in ongoing narrative. What if all afib patients blogged their experience with tags so the posts could be found (they also could add posts to forums or group blogs) with limited metadata (e.g., labels for causes, treatment, etc.)? The data is freeform but with some contextual analysis, someone might start to find patterns (e.g., frequent mentions of chocolate). Similarly, doctors could blog cases, showing more or less success with various treatments or discussion of causes.

The point is that there is a narrative to this ailment. Does the internet allow us to start to capture that narrative. Yes, by its nature, it is anecdotal. But so is the ailment. That’s life.

Now one problem is that some crackpot theories could end up in this pool of information — afib caused by aliens — but the internet is good at dealing with outliers. People could vote on posts, a la Digg (or its medical cousin, Pligg), to show agreement and start to swarm around shared views; posts with more links could gain more authority.

Tom says this ability for people “to concentrate information may be one of the greatest disintermediations of all.”

So what do you think? Fear not, I won’t turn this into the afib blog. But I think that a combination of survey data and narrative using the tools of the internet to bring together all this data and experience could yield new frontiers of research and inspiration for this condition and, of course, others. Please join in…..

: ALSO: Just searching on “afib” at Technorati yielded some fascinating links. This is a wonderful medical blog, which in turn led me to lots of good medical-journal articles and also to the medical Digg and to a rate-my-doctors site. Disintermediation, indeed.

The Afib Chronicle

Since I’m boring you with my afib chronicles, I should give you an update: I’m still in fibrillation but feeling much better thanks to being on a beta blocker, Toprol, which slows my heart rate and makes stairs once again no big deal.

I fired my cardiologist at the start of this episode. I’d had a great doctor — let’s call him Doc A — who, sadly, left practice to take a corporate job — some of the greatest talents in medicine can’t take the hassle, tragically — and ended up with this doctor — let’s call him Doc B — whom I didn’t much like. He wouldn’t consult directly with me; I think he should have zapped me immediately but by waiting past a magical 48 hour mark I had to endure an expensive and failed procedure and now I’m stuck in afib and on various unfortunate drugs for a month with a greater risk of clots and strokes; he took me off Toprol though Doc A had said I should take it as needed and he did so without explanation; when I tried to get a second opinion, he came and confronted me, which didn’t do wonders for my heart rate. I’m now with another doctor — Doc C — and he has been great because he not only explains and consults with me but he put me back on Toprol, which has ended my tachycardia (rapid heart beat). I lost a week’s work on the couch because of the debilitating effect of that tachycardia, but now I can move around and it’s a great relief.

I think I may just rate these doctors.

Because the risk of afib is blood clots, I’m now on blood thinner and have to go to the doctors’ offices to get my blood checked often. Before the procedure I had the other day, I didn’t have enough of the stuff in my blood; now I have too much. They told me not to take the pill last night and ordered me to eat broccoli, kale, or spinach to counteract the drug. I said I was going to a business dinner with one menu and had no idea what they’d be serving. I got a stern look from the nurse: Eat your kale, young man. Well, it so happens that the veggie last night was broccoli. I hate broccoli. But I was a good boy. Now I’m going back to the doc’s to get pricked again.

Now I may complain about a particular doctor or the inconvenience of some treatment, but let me make clear that I’m grateful to live in an age of miracles and knowledge, when these things can be treated. So I don’t want to seem ungrateful wishing that the counteracting agent to that drug were beer.