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.