No matter what your condition, you can find a vast amount of information on the Internet. There are online versions of medical journals, government sites such as the National Library of Medicine, Centers for Disease Control, or the Food and Drug Administration, and sites sponsored by medical schools.
Patients who take time to do research on their condition are more informed and have a better understanding of their disease. By going online, they can read articles by experts from all over the world. Internet-savvy doctors can provide patients with lists of sites containing relevant information.
In addition to this huge World Wide Web “library” (see list of sites) are two other resources, chat rooms and Listservs. Internet mailing lists, called Listservs, can link patients with the same disease via e-mail. To find a mailing list about a specific disease, go to www.liszt.com.
Chat rooms are Internet discussion groups in which patients can communicate with others suffering from the same condition. By tuning in to a specific Internet channel at a given time, patients can “talk” with others experiencing the same problems. Some chat rooms are moderated by doctors or other experts in the field. In this way cyberspace “support groups” are created, where patients can share information on remedies that worked for them.
On the downside, the vast amount of information to sift through is not only time-consuming, but overwhelming. When I typed “cancer” into the popular Alta Vista search engine, I retrieved 2,144,840 documents. Combining my search for “cancer” with “brain tumor” still brought up an overwhelming 21,265 documents.
A second problem is that misinformation can be transmitted as easily as information. The world of the Internet is a chaotic universe that includes massive amounts of unverified information from an innumerable variety of sources.
Unlike the publishing industry, most sites contain few editorial controls. A magazine or publishing house selects only the best items for publication, but anyone can put up a website. Thus there’s no guarantee that the “facts” and “research” you see are true and not a disguised sales pitch. Be cautious, particularly when participating in discussion groups and Internet chat sessions in which anyone can participate. To guard against misinformation, ask these questions:
- Who put up the site? Who is responsible for the editorial content? The most reliable sources for research news are government and university sites, because they’re least likely to exaggerate or misrepresent their findings. (Recognize them by .gov and .edu suffixes at the end of the address.)
- What is the purpose of the site? This ties in with the first question. Once you know who is responsible, ask why the site was put up. Consider the provider’s goals-and whether there’s a sales pitch or some other propaganda element involved.
- What are the credentials of the people editing the site? Since an M.D. after someone’s name is no guarantee of up-to-date medical reportage, a site should list the credentials of its writers or medical advisers.
- How does the site back up its claims? Does the site refer you to studies from medical journals or to tales of miracle cures? Be suspicious of information that isn’t well documented.
- How often is the site updated? Medical information changes quickly! Stick to sites updated often.
- Share the information and Web addresses with your doctor or other medical professional before testing out new medical information you’ve downloaded. Your physician is familiar with the details of your particular case, and can help you to tailor the wealth of online information to your situation.
An annotated partial list of government and educational medical sites follows:
- American Medical Association: www.ama-assn.org – This site is a “door finder”-that is, it has links to many other sites. Look here for the latest in health and nutrition studies, a national “doctor finder,” the Journal of the American Medical Association, and other AMA scientific publications.
- Association for Health Services Research: www.xnet.com/~hret/statind.htm – Another excellent “door finder.” Rather than a list of specific resources, this site gives sources (federal, state, hospital, educational, and health data) of information on the Internet. Click here to connect to anything from British Medical Journal to Outcomes Assessment and Research to OSHA.
- Hardin Meta Director of Internet Health Sources: www.arcade.uiowa.edu/hardin-www/md.html – This amazing gateway to health-related information, a product of the Hardin Library for the Health Sciences at the University of Iowa, allows users to browse by general topic headings, each of which will tell how many small, medium, and large sites are indexed here. More information is available here than in most other resources (some sites have 1,000+ links!).
- Harvard Medical Web: www.med.harvard.edu/old-home.html – This site contains current articles from the group’s various newsletters, which include the Harvard Health Letter. You can order various special reports. There are links to a variety of other health resources and organizations.
- Healthfinder: www.healthfinder.gov – This is the U.S. government’s “gateway to consumer health.”
- Health Touch: www.healthtouch.com – This site gives links to specific health organizations.
- HealthWeb: healthweb.org – This site is from the Committee on Institutional Cooperation, a consortium of teaching and research academic institutions, the Greater Midwest Region of the National Network of Libraries of Medicine, and the Greater Health Sciences Library. It is an easy-to-use finding tool for health-related topics, from AIDS to mortuary science. Sites under each topic are chosen by five CIC committees dealing with guidelines from content to technical aspects, and their criteria are also explained here. The alphabetical index includes both live links and topics that are being worked on, so users can anticipate what subjects will be clickable in the near future.
- Reference Resources: bones.med.ohio-state.edu/hw/ref/ – This is a collaborative effort between the Prior Health Sciences Library and the HealthWeb Project. The site is designed to organize and enhance access to quality health-related Internet resources. Publications online include The Merck Manual and Healthy People 2000, and the reference materials include drug information, with links to full-text articles from Medical Sciences Bulletin.
- Medical Matrix: www.medmatrix.org – Medical Matrix is a list of medical Internet sites rated by medical experts.
- Medscape: www.medscape.com – This is one of the richest commercial sites for general information on health. Contains searchable medical articles. Requires a user password, available for a fee with registration.
- MedicineNet: www.medicinenet.com – Contains an “ask the experts” feature.
- National Institutes of Health: www.nih.gov – This site is a gateway to the almost-infinite health research supported by the government, on everything from alternative medicine to rare diseases.
- National Library of Medicine: www.nlm.nih.gov – This site includes the U.S. National Library of Medicine’s huge online medical databases, including MEDLINE. Other resources include medical news, NLM publications, grants, and programs of the National Library of Medicine.
- New England Journal of Medicine: www.nejm.org – Search this medical journal by topic.
- Centers for Disease Control and Prevention: www.cdc.gov –
This government site covers a wide range of health issues, from serious infectious diseases such as AIDS and Ebola to health statistics, injury prevention, etc. Some of the official reports, reproduced online, are a bit technical, but there are also consumer-friendly pages and fact sheets on various diseases and disorders.
- Karolinska Institutet Library: www.kib.ki.se/index_en.html – The Swedish medical research center sponsors this site. Click on “Diseases & Disorders” to find many resources, from general overviews to technical information, covering aspects from diagnosis to treatment. The disease section is searchable by MeSH classification, the controlled-vocabulary subject heading list used by the (U.S.) National Library of Medicine.
- American Heart Association: www.amhrt.org – A good place to start for cardiac questions.
- National Cancer Institute: www.nci.nih.gov
- Mayo Clinic Health Oasis: www.mayohealth.org – A helpful consumer-friendly page includes recipes, book reviews, health quizzes, and a column called “Ask the Mayo Dietician.”
- CancerGuide: www.cancerguide.org
- OncoLink: www.oncolink.upenn.edu – An excellent general site on cancer, from the University of Pennsylvania Cancer Center.
Women and Children
Two excellent sites in this category include:
- Food and Drug Administration: www.fda.gov – Look here for releases and official positions on food news, biotechnology, pesticides, foodborne illness, food labeling, product recalls, and reports on dietary supplements. A timely and useful site.
- United States Department of Agriculture Home Page: www.usda.gov – This government agency is responsible for monitoring food safety issues. Look here for safety and food preparation information.
- Tufts University Nutrition Navigator: navigator.tufts.edu – This site has reviews of and links to more than 200 nutrition sites.
- American Dietetic Association: www.eatright.org – This nonprofit organization is a good source for diet information and nationwide referrals to dieticians. Be cautious, however; some of its “hot topics” pages are sponsored by companies such as McDonald’s or Procter and Gamble, and may be biased.
- Center for Science in the Public Interest: www.cspinet.org – This Washington, D.C.-based public advocacy group features resources like the Nutrition Action Healthletter. They research topics such as the health profiles of popular new foods, food labeling, and diet supplements.
- CyberDiet: www.cyberdiet.com – Look up nutritional values of foods; generate nutritional profiles and menu plans.
Pharmaceuticals and Drugs
- Center for Drug Evaluation and Research: www.fda.gov/cder/drug.htm – The Federal Drug Administration has pulled together a good collection of links here, including sections on drugs in the news, over-the-counter product information for consumers, adverse drug reactions, and the AIDS Clinical Trial Information Service.