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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 e.g., WebMD, Dr.Koop Anatomy and physiology, general health, medical conditions, diet/fitness/exercise Health and medical news e.g., Reuters Health News bites – headlines of latest research Drug information e.g., Eckerd.com, CVS.com, Drugs.com Uses, interactions, reactions Medical news News wires (e.g. Reuters Health) Healthcare-provider news feeds MyDocOnline, MyCare (through GreatWest) Technical/scientific interest publications Science, Nature Medical-interest publications JAMA, NEJM, Lancet, specialty magazines (e.g. Journal of Obesity Research) Medical research Reviewed and refereed publications JAMA, NEJM, Lancet, etc. Usually published by medical boards or professional associations University publications University departments, research journals, theses, etc. Self-published Bristol-Meyers-Squibb, GlaxoSmithKline, Merck, individual researchers Professional-level information Peer-reviewed journals (research and practices) Medical-specialty associations American Society for Hypertension, etc. Pharmaceutical Information Drugs.com, pharmaceutical companies Medical education/continuing education United States Government (NIH) Research and support organizations 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: 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: American Cancer Society American Diabetes Association American Heart Association March of Dimes National Kidney Foundation United Cerebral Palsy Others include: 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 New England Journal of Medicine The Lancet (requires registration) Springer-Verlag Kluwer Free, with limited registration Drugs.com Free access to consumer information E-mail and login-name access to professional-level information Free, with full-identity registration The Lancet 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) Limited archive access (six months to five years old) for registered guests Free to subscribers of related publications and services Nature Group publications Full-text/.pdf access to subscribed publications Title/abstract access to the company’s other publications American Association for the Advancement of Science 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 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 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 Most newspaper, newswire, and television “health reports” and “medical” columns are written/edited by medical doctors “News bites” are “short and attention-getting” 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 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 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 Industry lobbyists Fear of public perception Professional conflicts of interest Agency heads may have ties to industry giants Agency to agency conflicts 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 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 Highly-knowledgeable educators Numerous research projects University hospitals Sites of much medical research Most-difficult-to-treat patients usually referred here Medical continuing education 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 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 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 Specifications on devices How/where to use e.g., trocars (for laparoscopic/arthroscopic surgery), imaging devices Aimed at medical professionals Agenda: to sell their brand of device! “Hidden” sales pitches Manufacturers, vendors, and distributors Directly influence professionals and prescribers Influence prescribers through patients Direct to patient Researchers’ funding sources 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 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 “Government/industry is bad by definition” “Dietary Supplements are a way of life” Selling “snake oil” “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 Dermatology, plastic surgery, cosmetic surgery, cosmetic dentistry, etc. Delivery of medical supplies “Covered by” Medicaid, Medicare, insurance Supplier’s own “low-cost program” Medical insurance 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: Be couched in “weasel-words” “generally”, “in most cases”, “based on your information”, “I’d suggest” 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 Highly subjective Anecdotal, even if many supporting stories are given 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 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 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