Posts about medicine

Dr. Wow

November 30, 2008 by Jeff Jarvis
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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

November 30, 2008 by Jeff Jarvis
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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

February 10, 2006 by Jeff Jarvis
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Harvard Medical School is putting its lectures on podcasts. And here’s a list of medical podcasts.

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February 10, 2006 by Jeff Jarvis

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

February 10, 2006 by Jeff Jarvis
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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.