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  Consumer Guidelines:
DocTom's Top Tips for Online Health Searching

On a typical day, more than 5 million Americans go online looking for health information and advice. Our surveys at the Pew Internet & American Life Project show that more Internet users have sought medical information on the Web than have used it for shopping, stock quotes, or sports scores. Here are a few pieces of advice I often share with lay audiences in my lectures and workshops on online health:

  • Don't search alone. If the world of online health is new to you or you are dealing with a frightening or poorly understood new diagnosis, ask a Web-savvy friend or family member to sit by your side and show you the ropes the first few times you go online. And even if you are an experienced Web user, you may be able to benefit from the help and support of friends or family members who can help you extend your own search efforts and interpret the things you find.

  • Double-check the information you find online. Check several sites to make sure they all give the same or similar information. If you still have doubts, post a question at an online discussion group. Or e-mail a question to an online health professional or to the Webmaster of a site devoted to your condition.

  • Be on the lookout for other online patients who share your concerns. The Web is a wonderful place to look things up-and unlike print sources, it often makes it easy to connect with online authors. If you find a useful Web site, consider sending e-mail to the Webmaster. And be sure to keep an eye out for online patient-helpers who specialize in your concerns. Patients with the same disease may be able to offer a kind of comfort and common-sense perspective that even your closest friends and family members can not.

  • If you are dealing with a serious illness, consider joining an online support group, and be on the lookout for other online patient-helpers who share your concerns. Knowing that your online disease-mates are walking the same path, and are seeking both to give and to receive support, helps most online self-helpers feel comfortable in establishing meaningful online relationships based on trust and mutual concern.

  • Use the Net to stay connected with your own intimate network of family members and friends. The Net can be a powerful tool for staying in touch with those who mean the most to you. Family members, friends, and friends-of-friends may be able to help in unexpected ways. When you're going through an illness, keeping up with calls from well-wishers can sometimes become a burden. Consider sending out periodic e-mail bulletins to keep loved ones up to date on how you're doing.

  • Use the Internet to get referrals to the doctors and treatment centers you need. You can frequently use sites devoted to specific diseases to find the top specialists and treatment centers for your condition. You may even be able to correspond directly with leading specialists and researchers by e-mail.

  • Use the Internet to supplement your face-to-face doctor visits, not to replace them. It isn't always easy to interpret what you find. A frank and open discussion with your physician may help to clear up some of your uncertainties and help you either confirm or reconsider some of your tentative conclusions. The best-case scenario is for doctors and patients to work together, as a coordinated team.

  • Use the Internet to help evaluate the information and advice you get at your doctor's office. If you have doubts about your care, ask other online patients or your online support group to critique the treatment you've received. They may suggest questions to raise with your doctor on your next visit.

  • Tell your doctor what you've found online, and use your increased knowledge to become a more assertive patient. The better you communicate your needs, the better your doctor will be able to respond to them. Be assertive rather than aggressive; expressing your feelings and your views honestly and openly while showing respect for your medical professional.

  • Let your doctor see how your online research can be helpful to your care. If you've already mastered the basics of your condition, let your doctors know that they can skip the usual explanations. If you've found a good review article on your condition in a medical journal, leave your doctor a copy--with the parts relevant to your situation highlighted.

  • If some doctors aren't quite ready to become Net-friendly physicians, try to understand. Many doctors feel so overwhelmed by clinical responsibilities, paperwork demands, and their own pressing financial concerns that it can be difficult for them to see the benefit of spending additional time exchanging e-mail with patients or discussing information you've found online. While no conscientious physician should be threatened by a patient or a family member who wants to know all they can about their illness, many doctors are still uneasy at having their opinions questioned and uncomfortable with the idea that "their" patients are consulting other sources for information and advice. The transition to Information Age health care may be long and slow, but you can help your doctors make it.
One final note: The Internet is a two-way street. You can-and I hope you will-use the Net to find valuable information and advice for your own health concerns. But once you have your own situation under control, you may well discover that the things you've learned now make it possible for you to provide important help to fellow patients. I would hope that if and when the time is right, you will remember how you were helped and will reach out a helping hand to others.

Tom Ferguson, M.D.

Published in The Ferguson Report, Number 8, January 2002


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Copyright © 1999-2003 Tom Ferguson, M.D. The Ferguson Report is a free e-mail newsletter published at unpredictable intervals for the friends and associates of Tom Ferguson. ISSN 1520-5487