Transcript Slide Deck

Medical Information on
the Internet
Presented by Brenda F. Bell
[email protected]
Before the Amateur Computing Group of New
Jersey (ACGNJ)
2004 April 2
Finding and using information
What sort of information is available?
Where do I find the information I need?
What do I need to do to access it?
How reliable is the information?
Types of medical information
Consumer-level information
Medical news
Medical research
Professional-level information
Many different areas of information
Consumer-level information
General health information
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e.g., WebMD, Dr.Koop
Anatomy and physiology, general health, medical
conditions, diet/fitness/exercise
Health and medical news
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e.g., Reuters Health
News bites – headlines of latest research
Drug information
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e.g., Eckerd.com, CVS.com, Drugs.com
Uses, interactions, reactions
Medical news
News wires (e.g. Reuters Health)
Healthcare-provider news feeds
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MyDocOnline, MyCare (through GreatWest)
Technical/scientific interest publications
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Science, Nature
Medical-interest publications
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JAMA, NEJM, Lancet, specialty magazines
(e.g. Journal of Obesity Research)
Medical research
Reviewed and refereed publications
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JAMA, NEJM, Lancet, etc.
Usually published by medical boards or professional
associations
University publications
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University departments, research journals, theses,
etc.
Self-published
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Bristol-Meyers-Squibb, GlaxoSmithKline, Merck,
individual researchers
Professional-level information
Peer-reviewed journals (research and practices)
Medical-specialty associations
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American Society for Hypertension, etc.
Pharmaceutical Information
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Drugs.com, pharmaceutical companies
Medical education/continuing education
United States Government (NIH)
Research and support organizations
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March of Dimes, American Heart Association, etc.
Areas of information
General health and fitness
Drugs
Specific diseases and health concerns
Research
Best practices
Medical education
Finding the information
Google it
Search within a general info site (WebMD,
Discovery Health Channel, etc.)
Go to your health insurance company’s
site and go to “health education”
Check out Reuters
Check medical journals, medical societies,
disease societies, and the NIH directly
Retrieving the information
Free sites (no registration necessary) (WebMD,
Reuters Health, etc.)
Free, limited-identity registration (drugs.com)
Free, full-identity registration (The Lancet – limited
access)
Free to subscribers of related publications and
services (Nature, Science, Healthgate, MyCare,
etc.)
Paid subscriptions (The Lancet – full access,
CSA databases, etc.)
Free sites (no registration)
WebMD, Dr. Koop, etc.
Reuters Health
National Institutes of Health
Disease Research and Support Societies
Professional Association Sites
Drug Manufacturers
Publishers (limited access)
National Institutes of Health
Main site: http://nih.gov
Several subsidiary institutes, including:
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National Cancer Institute
http://www.nci.nih.gov
National Institue on Aging
http://www.nia.nih.gov
National Heart, Lung, and Blood Institute
http://www.nhlbi.nih.gov
National Institute of Diabetes & Digestive &
Kidney Diseases http://www.niddk.nih.gov
Disease research and support
Some of the better-known of these include:
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American Cancer Society
American Diabetes Association
American Heart Association
March of Dimes
National Kidney Foundation
United Cerebral Palsy
Others include:
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National Eating Disorders Association
National Rosacea Society
Neuropathy Association
Professional associations
(partial list)
American Academy of Family Physicians
American Association of Neurological
Surgeons
American Board of Internal Medicine
American Board of Medical Specialties
American Dietetic Association
Browse carefully: not all of these associations
have useful information for the medical
consumer!
Drug manufacturers (partial list)
AstraZeneca
Aventis
Bayer
Bristol-Myers
Squibb
GlaxoSmithKline
Merck
Novartis
Pfizer
Roche
Also check the Web sites for specific drugs
and brands: e.g., Avandia, Nexium, Zocor,
etc.; Ascensia, Accu-Chek, etc.
Publishers’ sites
Usually title or title/abstract only
Sometimes requires registration,
sometimes doesn’t
Pay-per-article usually available for fulltext
Examples
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New England Journal of Medicine
The Lancet (requires registration)
Springer-Verlag
Kluwer
Free, with limited registration
Drugs.com
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Free access to consumer information
E-mail and login-name access to
professional-level information
Free, with full-identity
registration
The Lancet
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Free access to titles, many abstracts, selected
full-texts/.pdfs
Paid/subscriber access to other abstracts and
most full-text/.pdfs
Journal of the American Medical
Association (JAMA)
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Limited archive access (six months to five
years old) for registered guests
Free to subscribers of related
publications and services
Nature Group publications
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Full-text/.pdf access to subscribed publications
Title/abstract access to the company’s other
publications
American Association for the Advancement of
Science
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Online access to subscribed publications (e.g.,
Science)
Free access to news items and title/abstract search of
other group publications
Paid subscription required
The Lancet – full text, all .pdfs
Science – full text, all .pdfs
Nature – full text, all .pdfs
Medline – abstracts through PubMed (National
Library of Medicine)
New England Journal of Medicine – free
abstracts, full-text for subscribers
Cambridge Scientific Abstracts
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Aggregator for databases including Medline, AIDS
and Cancer Research Abstracts, Physical Education
Index, and others
How reliable is the information?
Is the source an “industry-respected”
source of information?
Is the publisher or site owner trying to sell
something?
Does the author, publisher, or site owner
have an “agenda”?
Is the information presented as “medical
information”, “advice”, or “personal
observation”?
“Industry-respected” sources
Refereed journals
Vetted news sources
Well-known health-and-medicine sites
Government sites and publications
Medical specialty associations
Medical education sources
Research-and-support associations
Manufacturers’ information for professionals
Refereed journals
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Articles written by investigators who are
professionals in the field
Articles are reviewed, commented on, and
sent back for correction by other professionals
in the field
Extensively foot-noted, with complete
references
Conflicts of interest (employers, employment
histories, funding sources) are noted
Vetted news sources
Items reviewed by medical professionals
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Most newspaper, newswire, and television “health reports” and
“medical” columns are written/edited by medical doctors
“News bites” are “short and attention-getting”
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Only the most sensationalistic information is given
The findings may be anomalous in context
The findings may not apply in your case
Small-sample, short-term research – long-term effects?
Small segments of the population – specialized care
Medical databases often follow similar editorial
guidelines
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Scope and coverage usually limited to refereed journals and
conference proceedings
Not all journals and conferences are sponsored by the medical
industries
Well-known health-and-medicine
sites
Information designed for public
understanding
Editors are usually medical professionals
Detailed information sometimes available
Links to further information available
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Professional associations
NIH institutes
Research-and-support associations
Government sites and publications
Written/edited by professionals in the
specialty
At its best, vetted by “the best in the
business”
Extensive information at both provider and
consumer levels
Government sites and publications
(continued)
Alert: Government is not always unbiased
Public positions may be altered by
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Industry lobbyists
Fear of public perception
Professional conflicts of interest
Agency heads may have ties to industry giants
Agency to agency conflicts
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e.g., NIH v. FDA v. USDA
Different industries lobbying
Different conflicts of interest
Usually promote old, minimum standards
Medical specialty associations
By and for professionals in the specialty
Often certify and credential professionals in that
specialty
Information for professionals is highly-targeted
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Information may be vetted/reviewed
Information may be unreviewed, awaiting for
members to review, comment, and follow up
Information for the public is usually reviewed
and specific
Medical education
Medical schools
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Highly-knowledgeable educators
Numerous research projects
University hospitals
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Sites of much medical research
Most-difficult-to-treat patients usually referred here
Medical continuing education
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Updates on industry standards-of-care
Information on new specializations
Usually have to pay for courses and show credentials
to see info
Research-and-support associations
Aimed at healthcare providers, caregivers, and
persons with the disease/condition in question
Donations fund cutting-edge research
Experimental/investigatory information often
available
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You may need to show/fake credentials
You may have to pay to see it
Sometimes the source for standards of care for
the disease/condition
Manufacturers’ information
Pharmaceutical companies
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Professional-info sheets available in .pdf format
Subject-population information provided
Prescription, counterindication, and side-effect information
provided
Agenda: to sell more drugs!
Medical device companies
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Specifications on devices
How/where to use
e.g., trocars (for laparoscopic/arthroscopic surgery), imaging
devices
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Aimed at medical professionals
Agenda: to sell their brand of device!
“Hidden” sales pitches
Manufacturers, vendors, and distributors
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Directly influence professionals and prescribers
Influence prescribers through patients
Direct to patient
Researchers’ funding sources
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Industry-sponsored grants, stipends, and fellowships
Past or present industry employment history
Representing the corporate agenda
Non-competition agreements skew post-employment research
“Unbiased” funders’ ties to industry
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Corporate contributions to universities
Industry influence on government-funded research
“My (Not-So-)Hidden Agenda”
“Dissing” the standards
Selling a service
“Dissing” the standards
Gripe boards
“I had this problem, and the care I got left me in worse
shape than when I began”
Selling a viewpoint
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“Government/industry is bad by definition”
“Dietary Supplements are a way of life”
Selling “snake oil”
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“Fad diets”
“Bad” or “Dangerous” foods/medications
Selling unproven supplements
Alert: these are often supported by specious,
unsupported, or improperly-documented
“research”
Selling a service
Hospitals, doctors, medical clinics
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Dermatology, plastic surgery, cosmetic surgery,
cosmetic dentistry, etc.
Delivery of medical supplies
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“Covered by” Medicaid, Medicare, insurance
Supplier’s own “low-cost program”
Medical insurance
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Medicare supplemental insurance, etc.
Pharmaceutical insurance
Beware of “too good to be true” offers
Often high-premiums, difficult-to-qualify, limited coverage
What is the site’s goal?
Medical information
Medical advice
Personal observation
Medical information
Should be vetted or reviewed
If not an “industry-respected” publication,
reviewers names and credentials should
be listed
Reviewers’ names are prominently listed at
the end of all WebMD articles
Beware of snake-oil salesmen
“Medical advice”
Cannot ethically be given over the Internet as
such
Any medical advice given should:
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Be couched in “weasel-words”
“generally”, “in most cases”, “based on your information”, “I’d
suggest”
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Be given by named, credentialed professionals
Include disclaimers
“this is not medical advice”, “see your doctor”, “this [advice,
prescription, etc.] may not be right for you”
Anyone purporting to give actual medical advice
over the Internet probably has an “agenda”
Blogs, guestbooks, and personal
stories
Single points of view
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Highly subjective
Anecdotal, even if many supporting stories are given
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Not useful for determining if something is “bad” or “good” in
general
Observations not conducted under controlled circumstances
The wrong thing may be praised/blamed
No way to tell if there’s a direct cause and effect
Can be useful if you want to know what can go right or
wrong with a particular treatment
Just remember it may not apply to you as an individual
Not reliable sources of medical information
Summary
There are many types of medical content available on
the Internet, geared to many levels of surfer
Some of it is free, some of it you have to pay for
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Sometimes it helps to know where to look or what to look for
You may need to register with a site to access some or all of the
free stuff
Some of it is extremely reliable, some of it is not at all
reliable
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Evaluate the content based on
Where it comes from
Who’s paying for it
What the authors’ and/or publishers’ agendas are
Always consult your personal healthcare team before
making any changes to your personal regimen