Medical Information on the Internet

1. Medical Information on the Internet Presented by Brenda F. Bell arachne@webwarren.com Before the Amateur Computing Group of New Jersey (ACGNJ) 2004 April 2

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?

3. Types of medical information • Consumer-level information • Medical news • Medical research • Professional-level information • Many different areas of information

4. 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

5. 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)

6. 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

7. 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.

8. Areas of information • General health and fitness • Drugs • Specific diseases and health concerns • Research • Best practices • Medical education

9. 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

10. 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.)

11. 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)

12. 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

13. 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

14. 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!

15. AstraZeneca Aventis Bayer Bristol-Myers Squibb GlaxoSmithKline Merck Novartis Pfizer Roche Drug manufacturers (partial list) Also check the Web sites for specific drugs and brands: e.g., Avandia, Nexium, Zocor, etc.; Ascensia, Accu-Chek, etc.

16. Publishers’ sites • Usually title or title/abstract only • Sometimes requires registration, sometimes doesn’t • Pay-per-article usually available for full-text • Examples • New England Journal of Medicine • The Lancet (requires registration) • Springer-Verlag • Kluwer

17. Free, with limited registration • Drugs.com • Free access to consumer information • E-mail and login-name access to professional-level information

18. 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

19. 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

20. 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

21. 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”?

22. “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

23. 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

24. 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

25. 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

26. 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

27. 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

28. 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

29. 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

30. 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

31. 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!

32. “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

33. “My (Not-So-)Hidden Agenda” • “Dissing” the standards • Selling a service

34. “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”

35. 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

36. What is the site’s goal? • Medical information • Medical advice • Personal observation

37. 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

38. “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”

39. 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

40. 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