Samantha Jane Scolamiero is neither a doctor nor a computer whiz. She never
even finished her undergraduate degree. The North Shore native calls herself a
"survivor" -- in her case, a brain-tumor survivor. After her 1990 surgery left
her unable to work full-time, unable to read more than a few pages at a
sitting, that was about all she could hope for.
Then she discovered a tool that helped her find her way back to the world: the
Internet. Despite her disabilities, she figured out how to use her office
e-mail to set up an electronic support group. Now, six years later, her
"BRAINTMR" mailing list allows thousands of people to share information about
good hospitals, bad doctors, and brain-tumor treatment programs from Alaska to
Australia. And the mailing list has
served as a model for similar online groups run by people with allergies,
epilepsy, cancer, cerebral palsy, and scores of other conditions.
With this new community has come a calling. Scolamiero now considers herself
an advocate for patients who want to use Internet access to get more out of the
health care system, just as she did.
"The Internet has been a real salvation for me," Scolamiero says. She's so
cyber-centered, she can't quite separate herself from the various PCs and
laptops scattered around her cluttered office. Unable to remember a name, she
pauses. "There are some words I'm not able to access right now . . .
I like to say I had a Pentium," she says, referring to her brain, not her
computer processor. "Now I have a 286."
The computer access that changed Scolamiero's life promises to revolutionize
the role patients play in shaping their own treatment. In the past, doctors
gave orders and patients complied. Now that patients can seek out the same
journals, studies, and specialists doctors consult to make decisions, the
balance of power is shifting.
The benefits are enormous, as Scolamiero can attest. But so are the risks. For
every Web site hosted by a well-credentialed health center, there's one set up
by a con artist selling the latest miracle cure. The question facing the
medical community is this: now that the Internet is providing access to reams
of medical data, will the typical patient translate it into better health care
or simply get lost in a stew of information?
"The concern that I have for the lay population is Dr. No-Name on the
Internet," says Don Accetta, an allergist with a solo practice in Taunton. "Is
this someone who claims to be a physician and is practicing in his basement, or
is this someone who is recognized by his colleagues?"
Accetta, as a doctor who regularly uses computers, is still in the minority
among his colleagues. For all the inroads computers have made into our lives,
they still play virtually no role in the delivery of medical care. Hospital
accountants use them to work with -- and often manipulate -- complicated
insurance-company payment systems. Medical computing has also crept down the
hall to record-keeping departments, but interactive programs for doctors and
patients have never really caught on.
For years, Harvard psychiatrist Warner Slack has been trying to move the
hospital computer out of the finance office and into the clinic. In 1975, he
invented a diagnostic program that would allow a woman to sit at a computer,
answer a few questions, and get a prescription for medicine to treat a urinary
tract infection if she needed it. His colleagues were appalled. Computers in
the hands of patients, they said, would dehumanize medicine and threaten that
most precious of interactions, the doctor-patient relationship. Slack argued
that computers would enrich that relationship.
"I had thoughtful friends who said that the computer would kill medicine," he
says. "I say, any doctor who can be replaced by a computer should be." His
diagnostic program never caught on, but Slack later cofounded a research center
designed to move the whole concept forward: the Center for Clinical Computing,
based at Beth Israel Deaconess Medical Center.
A tall man with a trim white beard and a warm smile, Slack is hardly what one
might expect of a doctor who quit seeing patients to devote himself to
machines. Images of grandchildren dominate his World-Wide Web home page
(http://clinquery.bidmc.harvard.edu;
click on "people" for Slack's page). The
phone number listed there is out of date. And if computers are supposed to
create a paper-free world, they've failed Slack; he must pick his way through
an obstacle course of piles and milk crates to find anything in his Longwood
Avenue office. One stack of boxes contains copies of his recently published
book Cybermedicine: How Computing Empowers Doctors and Patients for Better
Health Care (Jossey-Bass). Consumer advocate Ralph Nader wrote the book's
foreword.
For more than 20 years, Slack says, fellow doctors ignored his talk about
computer terminals that would give patients access to the information they
needed to better participate in their own treatment. "Then came the Internet
and the Web," he says, "and very quickly, people began to have computers in
their homes."
Now, cutting-edge research once available only in medical school libraries is
just a click away. Support groups, like Samantha Scolamiero's, have moved out
of suburban living rooms and into cyberspace. Scientists looking for volunteers
to test new drugs can reach thousands of possible recruits instantly via
e-mail. "The potential is tremendous," Slack says. "The reality is that it has
already been helpful. There are a lot of problems, but on balance, it is
good."
He need look no further than his family to find an example. When Slack's
infant grandson developed diabetes, the child's parents spent months sorting
through conflicting advice from different doctors. Specialists said to "call
anytime" for help managing the child's condition, then never returned the
calls. So, Slack says, the family turned to Internet newsgroups and mailing
lists, where they found "companionship, reassurance, and practical help."
Not every doctor is so enthusiastic. Privacy issues, for instance, emerge at
every turn, and doctors who communicate with patients via computer wonder
whether e-mail qualifies as part of the medical record. They also worry about
what patients may find online: even well-meaning support groups can fuel rumors
about ill-advised treatments.
It's not hard, for example, to stumble on a World-Wide Web page promoting
something called "urine therapy." The Consumer Health Information Research
Institute, a Kansas-based antifraud group, chose that site as one of the 10
worst on the Web. The group also lists a site selling an electronic device
called the Zapper, which promises to kill "harmful parasites" in the blood.
Detailed directions on how to use the Zapper -- only $97 plus $7 handling --
can be found in an accompanying book titled The Cure for All Disease.
The Internet has hardly cornered the market on snake oil; anyone looking for a
bogus cure need only to walk into the local bookstore or glance at the
supermarket tabloids. But computer links provide almost immediate access to an
unprecedented amount of raw medical information, and there is no online Food
and Drug Administration to police it.
Tools do exist to make quality control easier. Jill Shuman, of the Tufts
School of Nutrition Science and Policy, has set up a site called the Nutrition
Navigator (http://navigator.tufts.edu).
With the help of a well-credentialed
advisory board, she and her staff evaluate the accuracy, balance, and
timeliness of hundreds of nutrition sites. (They've got plenty to choose from:
a search on the word "nutrition" turns up 143,698 sites, including an herbal
weight-loss program, a US Department of Agriculture site, and a page spelling
out "Cheese Nips Nutrition Facts.")
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The Nutrition Navigator's top scorers include several all-inclusive federal
government sites, a site called the Vegetarian Resource Group, and a Mayo
Clinic site described as "a source of nutrition advice that you can trust."
Among the losers: a site based on the screamingly popular Zone weight-loss
program and the Popcorn Institute site, which the Navigator describes as
"fluffy" and studded with "irresponsible, inaccurate statements about
carbohydrates."
Even patients who use tools like the Nutrition Navigator may get a cool
reception when they arrive at the doctor's office with a pile of printouts.
"I think the medical community may still be leery about giving people too much
information," Shuman says.
Twenty years ago, when Warner Slack first started talking about "patient
power," a colleague pooh-poohed the idea. "Patients want to be told what to
do," the colleague told him. Today, that attitude hasn't changed completely.
Though some doctors accept and even embrace the notion of the well-informed
patient, others hold on to the old way of thinking, and would rather control
the kind of information that gets into their patients' hands.
" `A little knowledge is a dangerous thing,' " says Slack. "Some
doctors still say that today." Don Accetta, the Taunton allergist, remembers
how strange it felt a few years ago when the FDA began allowing drug companies
to advertise directly to consumers rather than just using medical journals to
pitch drugs to doctors. His patients now ask for the drug "from the ad with the
windsurfer in the wheat field" -- a popular television spot for a new asthma
medication. At first, Accetta says, he was flustered, but he has adjusted: now
he listens to patients' questions, and if the drugs they suggest seem
appropriate, he writes a prescription. If not, he explains why. He takes the
same approach with patients who do research on the Internet.
"You have to deal with it, and if not, you're going to get in trouble," he
says. "More people are surfing the Net. They come armed with information."
Sometimes, a patient will alert Accetta to an important study he hadn't read
about. Sometimes, he spends precious office time sounding out patients who pull
information from questionable sources.
The work of a Geneva-based group called Health on the Internet may help him
with that task. They've published a suggested "code of conduct" that asks Web
site sponsors to clearly indicate the sources of their claims and the
credentials of their experts. Strict ratings will encourage people to use
sanctioned sites, but they could also end up marginalizing the kind of
information that makes the Internet so refreshingly subversive. As an
unfiltered forum, it's one of the few places to air information about less
conventional, but possibly worthwhile, treatments and therapies. Some of those
may get caught in the anti-quackery nets cast over the Internet.
Alternative treatment will always have a place in rank-and-file health forums
like Samantha Jane Scolamiero's brain-tumor group. Anyone with a computer and a
modem can read or add to the 50 to 70 messages she sends out each day. (To
contact Scolamiero, visit her
home page.
Scolamiero works out of a small home office in Somerville's Winter Hill, but
none of the people she deals with daily can see her. If they could, they might
imagine her in a white coat, rather than in a fading pair of fuchsia slacks and
a long, thick ponytail. She sometimes has to remind people who ask for advice
that she doesn't have any official credentials.
"I am not a medical doctor," Scolamiero writes. "I am a brain-tumor survivor
who started the first online support group for patients, families, and medical
professionals."
Scolamiero now works with a group called the American Medical Informatics
Association to advocate for patients who want to use their computers to heal
themselves. Sure, she says, people post misinformation on her list. Then other
people come along and correct them. Scolamiero wants to make sure the patient's
point of view doesn't get lost in the effort to "professionalize" the exchange
of health information on the Internet.
"Anecdotal stuff is the stuff that patients find most helpful, but it's the
stuff that scares doctors the most because it is not peer reviewed," she says.
Rather than dismiss the Internet, she urges doctors to get online themselves
and help patients learn how to scrutinize what they find there.
Warner Slack compares the rise of the Internet to another significant event in
"patient empowerment": the 1956 publication of Benjamin Spock's Baby and
Child Care.
"In the old days, there really weren't many ways for patients to become
informed," he says. "Spock's book was a major breakthrough."
The book shook up the world of pediatrics, he says, but it sold 42 million
copies and gave families more control over their children's health. More than
50 years later, the Internet may do the same thing for grownups.
"Doctors typically aren't used to well-informed patients, and have to adjust,"
Slack says. "But good doctors should welcome this."
Freelance writer Tinker Ready covered health and science for the News
& Observer in Raleigh, North Carolina, before moving to Somerville in
October. She can be reached at
tinkerr@mindspring.com.
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Where to click when you're sick
Internet users who follow a few simple rules can usually identify quality
health care information. When using the World-Wide Web, start by sticking to
clearly identified sites sponsored by well-known organizations. Check the
sources. Can claims be linked to reliable research? Are the authors affiliated
with an established medical school or hospital?
Be wary of commercial sites posted by companies and individuals with something
to sell. Often, such sites are just ads with links.
Home pages posted by individuals may contain valuable information, but play it
safe and double-check data with another source. The same applies to the e-mail
bulletin boards called newsgroups and mailing lists, which send mail to
directly to members.
When in doubt, ask a doctor, nurse, or physician's assistant. Don't be dazzled
by a slick-looking site or an important-sounding title. And finally, use common
sense.
Here is a short list of Web sites to start with.
General health sites
Health Explorer -- A sweeping site with
lots of links.
Health Finder -- The federal government's
link to agencies, state health departments, and professional organizations.
Healthweb -- Links to the best of the health
sites, as chosen by a group of librarians from Midwestern medical schools.
Physicians' Choice -- Doctor-reviewed and
-oriented, but patient-friendly, too. Online support and discussion groups.
Health on the Net -- An
interesting organization with a nice list of newsgroups and electronic mailing
lists.
US Government
National Institutes of Health -- The federal
government's massive medical research arm. Browse under the "institutes" link
to find agencies like the National Institute of Allergy and Infectious Disease,
which handles AIDS and HIV research.
The Food and Drug Administration -- Information on
the safety of drugs and medical devices.
Public Citizen Health Research Group -- Don't
think the above are doing their job? Call this D.C.-based watchdog group, which
keeps an eye on the agencies charged with regulating drugs, medical devices,
doctors and hospitals, and occupational health.
Journal articles
Internet Grateful Med -- This is a search
engine for the National Library of Medicine, which includes Medline, a database
of more than 8.8 million references to articles published in 3800 biomedical
journals.
Multimedia Medical Reference Library
-- Set up by a PhD/MD candidate at Tufts University, this site links to Medline
and directly to 277 journals.
Information on doctors
Massachusetts Board of Registration in Medicine
-- Here's where to find out everything
you need to know about your local doctor. Listings include schooling, awards,
and number of malpractice claims.
The Florida Medical Network -- This
group has a nice link to many of the medical specialty groups, like the
American College of Cardiology.
Massachusetts Medical Society -- State
doctors' association. Provides links to local affiliates and the New England
Journal of Medicine.
American Medical Association -- Powerful
national doctors' organization.
Physicians for a National Health Program -- Small
but vocal doctors' organization with an agenda quite the opposite of the
AMA's.
Pharmaceuticals
Rxlist -- A comprehensive collection of
information about prescription drugs, posted by a San Francisco hospital
pharmacy director.
Center Watch -- Want to help test an
experimental drug? This site, from a Boston-based trade publisher, lists more
than 5000 studies that need volunteers.
Alternative medicine
Office of Alternative Medicine at the National Institutes of Health
-- Alternative medicine on the Internet can get
pretty dodgy. Play it safe on this site.
American Association of Naturopathic Physicians
-- Naturopathic healers don't attend traditional
medical schools, but they are licensed in 11 states. Massachusetts is not one
of them. Naturopathy emphasizes clinical nutrition, acupuncture, homeopathic
medicine, botanical medicine, psychology, and counseling.
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