Health on the Net Special: The Web way to good health
Want to know more about your body? Forget the library; go for the Internet. But user beware.
Tuesday 16 June 1998
Now all that has changed. The Internet is bursting with health information. In February just one directory - Yahoo - had links to 4,563 sites devoted to diseases and medical conditions, 1,101 for mental health and 307 for dentistry. Today there are certainly more - it is estimated that the total number of web pages doubles every nine months. Anyone with a PC and a modem sitting at home can have access to mountains of new research, as well as a host of alternative and often controversial remedies. Not only that, but there are support groups where you can swap experiences and information with others suffering the same problem. It is not uncommon for patients to appear in their GP's surgery clutching computer print- outs and demanding new and exotic treatments for their condition.
Inevitably, the medical profession is in two minds about all this. On the one hand, the informed patient fits the current rhetoric that makes us all consumers. We shop around for the best value when buying a car or a kitchen, so why shouldn't we do the same with our health? But the old habit of being an infallible source of wisdom dies hard, and there are genuine fears about the quality of information available on the Net.
A good example of this contradiction appears in the current issue of the British Medical Journal, in an exchange of letters about the controversial link between the MMR vaccine and autism.
"As a parent of young children," writes J Selway, senior registrar in public health, Edensor, Tunbridge Wells "I have become aware of the website "The Informed Parent": http://www.unc.edu /aphillip/WNW/ vaccine/dvm.txt). Although it is written by a non-physician it is written in the style of a medical journal which lends it more authority than it may merit ... it argues that vaccination is dangerous and unnecessary."
Selway goes on to suggest that it is no longer enough for doctors to give the simple reassurance they would have done in the old days. "The challenge is to produce information for parents that is accessible (including on the Internet) that addresses concerns that websites like this engender."
Not only does the letter highlight the theoretical issue, it nicely illustrates the practical problems involved. When I tried to find "The Informed Parent" web site, I couldn't. Wrong address? Temporary glitch? Who knows.
Someone who has been trying to build bridges between the medical profession and all the new resources on the web is Robert Kiley of the Wellcome Trust in London. His bi-monthly newsletter "He@lth Information on the Internet" is an invaluable source for tracking new developments.
"Doctors are worried about the Internet," he says, "and there have been studies in the journals showing that much of the information, even in specialised newsgroups dedicated to a disease, is inaccurate."
He describes some recent scams and idiocies, such as the sites that sprang up in the wake of the Viagra frenzy, using copies of the proper research by its makers, Pfizer, to sell something called Viagro that turned out to be a herbal stimulant. And there are other stories about people selling DIY sterilisation kits on the Net, not to mention a site where you can select donors you fancy and buy their sperm.
But this is part of the age-old battle between freedom and censorship. The anarchic, non-hierarchical nature of the Web does allow porn, Diana death conspiracy and sperm donor sites to flourish, but it also makes available an unbelievable wealth of information.
So how to separate the good stuff from the rubbish? Let's suppose that your child has been diagnosed as having asthma. Where can you go to find out what's new and what works? First step might be one of the major search engines, such as Alta Vista, Excite or Hot Bot (I'm assuming a basic familiarity with the Internet). The trouble is that putting in the word "asthma" will yield thousands of results.
These engines are much more useful if you are looking for something specific, such as the possible side-effects of a new drug or a particular controversial treatment. There is valuable information on the most obscure topics out there. For instance, a search for "amyotrophic lateral sclerosis" on one search engine yielded a dozen sites; another threw up a further 3,067 hits. But how do you know what is reliable?
"These four points are useful to bear in mind when judging how seriously to take the information a site gives," says Kiley. "First: does it say who the author is? Second: does it give references for its claims? Three: does it clearly state any vested interests? Four: does it show when it was last updated?"
The sites - gateways - listed below are all likely to throw up more reliable information than most. Many of the sites have a link to the massive medical database, Medline. This contains 9 million records, abstracts (mostly) from articles in thousands of journals. Any bit of serious research in the world will be referenced in Medline, and that is part of the problem. Put a search for asthma in there and you will get thousands of detailed results, many of them impenetrable accounts of biomolecular interactions. On the other hand, if you have a specific query, such as "Has anyone tested the effects of glucosamine on rheumatism?", you may well get something useful.
Using the Internet has absurdly been called "surfing"; in fact it is much more like being a librarian. You need to be patient, careful, precise and organised in order to find something useful. Gateways and other useful sites are all free, but for many you have to register, which just means providing name, address and other details. For some you may have to pay - via credit card - for articles downloaded. They all have their own search engines that may take a bit of getting used to.
Biomednet http://BioMed Net.com/ A bright, busy site with user-friendly articles on all sorts of medical and biological science topics, plus a search engine that will find a range of serious and often pretty dense journal articles.
Medical matrix http://www. medmatrix.org/ A site with a mix of results including articles from research journals, extensive chapters from online text books and patient care guidelines, and a link to asthma articles in the New York Times.
Medical World Search http:// www.mwsearch.com/ Has a search engine that will yield lots of proper research papers from high-quality journals, but it does take a bit of getting used to. There are all sorts of settings that you can change, so it can be bewildering at first, but it's worth persevering.
Medicine Net http://www. medicinenet.com/ A rather more chatty and consumer- oriented site. Short entries; non-technical.
Medscape http://www.med scape.com/ A heavyweight professional site where a search for asthma throws up detailed articles such as: "Alpha1-Antitrypsin Deficiency in COPD", as well as those that sound more accessible, like: "A Pediatric Asthma Self-Management Program That Gets Results".
Medexplorer http://www.med explorer.com/ Not a source of documents and research papers, but gives leads to useful resources. A number of them involve alternative and complementary medicine as well as self-help and support groups.
Healthworks http://www. healthworks.co.uk/ A useful site and one of the few general UK ones. Has several e-mailed newsletters on subscription, such as "Health on the Internet", with regular lists of new medical and support sites, and "Women's health on the Internet". Also a database of 300-plus journals and links to many other sites.
Mining Co http://www.mining co.com/ This site has sections on computers and hobbies but is useful for two health sections with clear, untechnical information. One covers general health; the other deals specifically with women's health. Links to alternative medicine sites and links to support groups.
Health on the Net http:// www.hon.ch/ Here a panel of experts evaluates sites and divides your hits into "recommended" and "not checked". Gives lots of information on each to tell you whether it is worth visiting. Asthma yielded 64 approved and 1,600 unchecked.
Omni http://www.omni.ac.uk/ A UK attempt to bring quality control to online information, funded by, among others, the Welcome Trust and the Institute of Medical Research. Not as comprehensive as Health on the Net. It produced only 23 hits on asthma, but is clearly set out, easy to use and authoritative.
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