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.

  • Robert Banghart

    The article states the results of studies that, “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.”

    [As an aside, it appears that the article itself is at least 50 per cent inaccurate when citing the estimate of those web sites dealing with nutrition in that they cannot be both 45 per cent and 89 percent inaccurate at the time.]

    What is doesn’t show is the results of studies that test the accuracy of medical journal articles and doctor’s advice regarding cancer and nutrition. There is simply no way a physician can keep up on the release of new information on either topic.
    Is there anyone who doubts that doctors would give out at least as variable the percentages cited for web sites?

    Even Jeff’s suggestion in his book that doctors create their own websites and curate the information is not a panacea. Looking at just the issues of cancer and of nutrition there are various and (apparently) growing numbers of schools of thought about each and which contradict each other more with the passage of time rather than less.

    With the expansion of information on the internet, even with 100 per cent adoption of Jarvis’s curated scheme, the role of any treating physician as the font of wisdom will continue to fall. The “priesthood of medicine ” is toast and the sooner both the priests and the parishioners realize that the better.

  • I like what you’re saying here, Jeff. In a perfect world (without malpractice suits) I would agree with you 100 percent. However, the reality of the situation is that the blogging doctors would be opening themselves up to a flood of lawsuits.

    My GF is a nurse, and she has to be very careful with what she tells patients, because they regularly misinterpret advice. We all have different allergies, different medical conditions, different genes. What works for one patient could have disastrous consequences for someone else.

    I think lawsuits are the biggest barrier to what you’re prescribing here.

  • This is an interesting addition to studies on the reliability of online health information: “To compare the scope, completeness, and accuracy of drug information in Wikipedia with that of a free, online, traditionally edited database (Medscape Drug Reference [MDR]).”

  • Mike G

    Gee, what’s accurate in nutrition? The word of the government that told us trans-fats were healthier than animal fats, and cholesterol was bad for us– until it found out the reverse was probably true? God save us from nutrition experts as much as nutrition quacks on the web.

  • Let’s face it the citizen-doctor will always choose the latest pill, the world famous surgeon because his illness is more important, urgent and has unique features. The reality is that lots of illnesses get better without intervention, common fatal illnesses usually follow a common and inexorable progression. No amount of internet searching or lawsuits are going to make much impact on this. Using the internet to reinforce a solid education in health care will.

  • In my case, I was seriously ill for several months because an incompetent doctor (who is now retired) could not diagnose hypoglycemia, and then referred me to an incompetent nutritionist who recommended a diabetic diet, which nearly killed me. If it weren’t for the internet, where I researched because I was too ill to leave the house, I would be dead.

  • 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.

    From this sentence alone we can conclude that the Observer is at least 33% inaccurate.

    I’d trust the results of a Google search before I trusted what a newspaper said.

  • The information that doctors receive is frequently tainted by commercial interests. One of the biggest sources of misinformation takes place in the area of continuing medical education (CME), the seminars that doctors need to take to keep up with their licensing requirements.

    This site has as its mission blowing the whistle on conflicts of interest and misinformation. (Jeff should be happy with this instance of citizen journalism.)

    If the professional parts of the medical information system can’t be trusted why think that the areas aimed at the general public will be any better?

  • Pingback: What healthcare sites do you trust? | Lannie Byrd()

  • Peg

    Perhaps we should invite medical doctors to join online conversations about health topics rather than serve as information-site curators. The predominant biomedical model privileges a narrow, severely reductionist perspective on health and illness.

    Doctors have as much to learn in these conversations as they do to teach.

    Diverse professionals bring valuable points of view, experience, and ideas to health onversations: medical librarians, pharmacists, farmers herbalists, physical therapists, exercise scientists, medical researchers, anthropologists, and others.

    Much of the best health information comes from ordinary laypeople who share the deep, concrete knowledge that comes from living and coping with illness, or whose stories of personal change can motivate others to adopt health-promoting behaviors.

  • Ross Mayfield once told me that “when information wants to be free, it will find a way.” I think that’s what we see happening in the medical field as it’s happened in other industries. What’s pretty clear is that there are going to be changing roles played by patients, doctors and insurers . . . and it seems likely that entirely new roles are going to evolve.

    I don’t think that anyone has gotten to the bottom of this yet, but I also think that it can only be a good thing for consumers to be seeking as much information as they can find (even if it’s inaccurate or incomplete) and talking about it with their friends, family, social networks . . . and yes, their doctors.

  • We need a few more like you, me and some of the sensible people commenting above. I wrote the following in January’s monthly feature of and got a a lot of feedback from it.

    Terrorist attacks killed 2,996 people in 9/11. This is counting the unfortunate passengers on the four airliners and it has since been said that was the most tragic day in the history of the U.S.

    Four commercial jets crashed that day……. Let’s imagine if six jumbo jets crashed every day in the US. That would claim the lives of over 750,000 people every year? No one could disagree that it would be a worse tragedy even than 9/11.

    This tragedy is happening right now. Over 750,000 people actually do die in the United States every year, although not from plane crashes. They die from something far more common and rarely perceived by the public as dangerous: modern medicine.

    Dr’s. Gary Null, Carolyn Dean, Martin Feldman, Debora Rasio and Dorothy Smith concluded a report in 2003 called ‘Death by Medicine’. It showed that more than three quarters of a million people in the United States die every year from conventional medicine mistakes which is the equivalent of six jumbo jet crashes a day for an entire year.

    Peter Charalambos

  • rmc

    PatientsLikeMe is much more than a social networking site for people with the same terrible diseases to come and sob on each others shoulders. The site makes money by selling all manner of data and statistics to market research companies and pharmaceutical companies. I think OKCupid is doing a similar thing.

  • I’ve been looking so many places for thsi information.