Message-ID: <Pine.SOL.3.91.970602113317.5269I-100000@fox.ksu.ksu.edu> Date: Mon, 2 Jun 1997 11:35:11 -0500 From: kerry miller <mailto:astingsh@KSU.EDU> Subject: Re: DECENTR: New MSH Electronic Discussion Group To: mailto:DEVEL-L@AMERICAN.EDU
Decentralization begins at home.kerry
---------- Forwarded message ------------ Date: Sun, 01 Jun 1997 15:11:20 -0500 Subject: [CO-CURE] MED: Medicine and On-Line Self-Help
~~~~~~~~~~~~~~~~~~ Editor's Note: This post is forwarded on behald of Arlette Lefebvre, MD. It pertains to medicine and on-line self-help in general, but has obvious implications for the CFS-FM patient and professional medical care provider. ~~~~~~~~~~~~~~~~~~
Medicine and self-help have changed dramatically in the last 50 years. The self-help movement, which started as Alcoholics Anonymous support groups, has evolved into a powerful advocacy force and turned healthcare on its head.
Patients are now health consumers, and they no longer suffer passively from an illness nor blindly follow their doctor prescription or advice. They also want to learn how to stay healthy and fit, they expect to be treated as healthcare partners, they demand state-of-the-art care and treatment choices, and they don't hesitate to seek a second opinion.
Meanwhile, physicians can't possibly keep abreast of the explosion in biomedical knowledge and technological breakthroughs. Amid all these changes comes the digital revolution. Suddenly, doctors and patients are mingling freely online, where boundaries between health professional and layperson aren't quite as clear-cut as they are in the outside world.
Trash bin or redeemer?
Is this a good thing? Do such online exchanges enhance or complicate real-life doctor-patient relationships? Ask physicians and they either dismiss the Net as a gigantic information trash bin or rave that it's the greatest development since penicillin.
Truth is rarely straightforward, much less simple. But here are some reasons why you should at least consider the possibility that the Internet, including online self-help networks, may be among a doctor's best friends rather than worst enemies:
1. The Internet, a global library instantaneously at our beck and call, offers the latest research findings and a cornucopia of health education materials written for patients. Experienced online self-helpers know better than most physicians where to find good health information on the Net because they have a compelling need:namely, their own illness to locate it. They can be our guides.
2. At the Hospital for Sick Children in Toronto, the recent case of a 14-month-old who had a rare infection of the central nervous system brought this vast-library concept into clear focus for me. Traditional MEDLINE and UTLink searches by physicians and library staff didn't yield any information on similar cases in the literature. Yet a 10-minute advanced search in my office using Alta Vista (http://www.altavista.digital.com) generated 40 references to similar cases around the world. These included the name and phone number of a physician in Boston whose clinical research trials on new medications inspired our hospital team to try a new and ultimately successful treatment on this child after all conventional treatments failed.
3. Online services make it easier to disseminate research findings that self-help leaders often weave into online FAQs, or frequently asked questions. Examples of such findings are the role folic acid plays in reducing neural tube defects, and the connection between proper diet and lower cancer risks. FAQs can be excellent screening and early intervention tools.
4. Knowledge is power. Informed patients, whether they harvest information online or in print form, are positioned to become active partners in their treatment plan.
5. Physicians are trained to be very selective when sharing medical information with patients and only after carefully assessing their personality, maturity, and readiness to know. Many of us believe that this power and judgment regarding disclosure are the privilege bestowed by years of sleepless nights on call, not, as seen from a patient's perspective, by months or even years of living with disease. But this notion is simply wrong. Let's face it: Doctor doesn't always know best, which is why, for everyone's sake, the informed patient can and must become a member of the high-performance health team.
6. In keeping with the shift from illness management to illness prevention, online self-help networks can reduce stress, prevent escalation of health problems, and provide after-care support by drawing on effective and low-cost volunteer resources. Revolving-door hospital admission policies, which seem to be today's norm, are chipping away at the bond between healthcare provider and patient. To compensate for that, experienced patients are becoming providers online, sharing their personal experiences coping with an illness or undergoing a treatment, and answering many of the questions doctors no longer have the time to field.
7. There are hundreds of wonderful role models among leaders of online self-help groups. As a psychiatrist, I can rightfully claim that one good role model is worth a thousand shrinks when it comes to living and coping with a chronic illness or disability.
8. Of course, there's always the danger that what the Internet delivers in a flash will be misinformation rather than truth, that neophytes may be led astray by empty promises and unscrupulous charlatans. Which is why, ideally, doctor and patient should explore the Net together, not separately just as researchers with complementary skills and expertise collaborate to create a pioneering treatment.
The Internet can be a physician's best friend and digital aide, on the leading edge of patient care. Hopefully, this recognition won't meet the same mulish resistance that Ignaz Semmelweiss, a Hungarian obstetrician who practiced in the 19th century, met when he discovered how important it was, simply, for doctors to wash their hands before patient exams. ~~~~~~~~~~~~~~~~~~~~~~~ Arlette Lefebvre, MD, is a staff psychiatrist at the Hospital for Sick children in Toronto, Canada. Shge can be reached at (416) 813-7526 (voice mail) or (416) 813-5326 (fax) or mailto:arlette@pro-mail.com (Email).
You can also visit dr. froggie's home-away-from home at http://www.ablelink.org Arlette Levebvre is founder of Ability Online, a bulletin board in Canada that boosts the self-esteem and social skills of youth who face illness, pain, and disability, often in a hospital many miles from home.
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