Technology and society: Is the outbreak of cancer videos, bulimia blogs and other forms of “user generated” medical information a healthy trend?
VIDEOS of skateboarding dogs on YouTube might not appear to have anything to do with blogs about living with asthma. But the rise of “user-generated content”—spurred by sites such as YouTube, Facebook and Wikipedia—has also infected health care. Millions are now logging on to contribute information about topics stretching from avian-flu pandemics to the extraction of wisdom teeth or the use of acupuncture to overcome infertility. You could call it user-generated health care, or Health 2.0.
In some ways this is nothing new. The BrainTalk Communities, an online support group for neurology patients, began in 1993. But content now comes in different forms, such as blogs and videos, and there are many more contributors. More than 20% of American internet users have created some sort of health-related content, according to Jupiter, a market-research firm. The hype around “Web 2.0” has made people aware of the new possibilities, says John Grohol, a psychologist who launched PsychCentral.com, a mental-health website, in 1995. The result, he says, has been a “snowball effect” of new content and new users.
To gauge the size of this snowball, look at OrganizedWisdom, a firm based in New York. It launched in October 2006 as a health-care Wikipedia of sorts: a site to which consumers could contribute their own nuggets of health wisdom. Yet after only a few months it transformed itself into an index of the existing web content. The firm's founders had discovered that there already was quite enough user-generated health information online; the real problem was finding the good stuff.
The explosion of user-generated content in health care is, in part, the result of broader internet trends: more and more people have broadband access and the tools for creating content are getting easier to use. New software, for instance, makes it easy to launch and maintain a site such as FluWikie (which provides information about preparing for an influenza pandemic), and digital cameras make it a snap to take and upload photos of, say, epigastric hernia surgery.
But there are other drivers, too. Those with multiple chronic conditions, such as diabetes and depression, or lesser-known illnesses such as chronic fatigue syndrome, are anxious to get tips from others in similar situations. And today's body of medical knowledge is too vast for any one doctor to know it all. Cathy Fischer, a producer at a non-profit television company in San Francisco, for example, was not getting the information she needed from her doctor. So she joined an online group to connect with others who, like her, had undergone fibroid surgery.
In some ways it is strange that there is so much discussion of health-related matters online, given that health, like money, is a topic that many people will not discuss even with family members. People do not seem to realise how permanent information can be online, warns Jennifer King, a researcher at the University of California in Berkeley. She worries that personal data could be misused. Some sites mitigate that risk by recommending the use of pseudonyms. So Meg7 talks about her family's struggle with Lou Gehrig's disease, Aprilly shares information about babies with colic, and jojo1972 writes about how she handles migraine headaches.
Misinformation is another worry. On the internet, as the old saying goes, nobody knows you are a dog—or an idiot, notes Dan Keldsen of AIIM, a non-profit association based in Silver Spring, Maryland, which helps companies manage digital information. And too much health information can confuse people, says Monique Levy of Jupiter. But a survey by the Pew Internet & American Life Project in Washington, DC, suggests that although user-generated information offers consumers more health options, the upside outweighs the risk, says Pew's Susannah Fox. Nearly one-third of the 100m Americans who have looked for health information online say that they or people they know have been significantly helped by what they found. In contrast, only 3% reported that online advice had caused serious harm.
A lot of user-generated health information is accurate. A panel of neurology specialists judged that only 6% of information posted in the epilepsy-support group of BrainTalk was factually wrong, according to a study published in 2004 in the British Medical Journal. And with enough people online, misinformation is often quickly corrected. Inaccurate posts on the website of the Association of Cancer Online Resources (ACOR), for example, will be pointed out within two hours, says Gilles Frydman, the founder of the association, based in New York.
In some cases web-based information from other sufferers can be a patient's best hope. In the BrainTalk study, 40% of respondents said they used the site because their doctors did not or could not answer their questions. But the internet's power to connect people means that a person diagnosed with a rare form of cancer can find hundreds of other people across the world who can recommend doctors or provide first-hand information about treatment, explains Mr Frydman. He founded ACOR in 1996 after his wife was given inaccurate information about the treatment she needed for breast cancer. Given the potential benefits, the risk of giving up some privacy seems insignificant, he says. “If I am diagnosed with a rare cancer, I will think for two minutes, and then I will agree that giving up my privacy is worthwhile.”
Some observers expect even greater benefits from user-generated health sites in future. Patients who live with chronic diseases such as epilepsy often know more about them than their doctors, contends Daniel Hoch, a professor at Harvard Medical School who helped to found BrainTalk. Many doctors, he says, “don't get the wisdom of crowds.” But he thinks the combined knowledge of a crowd of his patients would be far greater than his own. A wiki capturing the knowledge of, say, 300 epileptics could be invaluable not only to others with epilepsy, but also to the medical professionals who care for them. Their aggregated understanding, he says, “would be helpful to all health care.”