"… but doctor, I found this on the internet…": {health (mis)information on the internet}

Why You Want Your Patients To Use the Internet

• Because you don't have enough time with your patients to explain as much as you'd like
• Because patients usually don't know enough to ask good questions about the medical condition and its treatment
• Because good information helps patients re-gain some control over their lives
• Because good information leads to understanding of and compliance with the treatment protocol
  
  

  Why You Want To Teach Your Patients HOW To Use the Internet

• Because misinformation and fraud abounds on the net
• Because we may misinterpret what we read
• Because our memories are bad, and attribution goes first
• Because while the information may be true about patients IN GENERAL, no patient is a generalized person
• Because many concerns of patients are not medical but economic, psychological and social, areas in which doctors are not experts
  
  
  

  AN IMPORTANT REMINDER: All the information contained in these web sites is intended to help people make intelligent decisions about their own health care in consultation with their doctors. The best way for people to use any of these resources is to print out the information and mark the sections they want to discuss with their doctors. That way they will always quote the information correctly, and their doctors will know where they got their information.

  
  
  
• Evaluating the Reliability of Health Information
• Five Key Sites
• Reliable General Portals for Health Information
• Finding Articles in Online Magazines and Databases
• Coping with Disabilities
• Nutrition and Fitness
• Support Groups
• Financial Assistance and Caregiving
• Online Medical Reference Books
• Hispanic Health and Information in Spanish
• Goodies Just for Health Professionals
• Improve Your Search Technique
• Strategies for Finding Health Information
  
  

  EVALUATING THE RELIABILITY OF HEALTH INFORMATION ON THE NET

  The net is full of both misinformation and outright fraud, and in the case of healthcare, both are dangerous. It's important for users to be skeptical.

• Ask: "Sez who?" At a minimum, you want your information from a doctor. Better yet, a specialist. Better still, a board-certified specialist. Best of all, a board-certified specialist whose site is sponsored by a hospital, a university, a government agency, or an organization like the American Heart Association -- if these organizations will trust the doctor with their own credibility, YOU can trust the doctor.

• Ask "Why are they giving this away for free?" For health organizations like the American Cancer Society, collecting and disseminating this information is their primary purpose. Government agencies are returning to the public work that was done with our tax money. For universities, it's part of the teaching mission. BUT for others, it's a way to make money, either through advertising or through selling information about site visitors.

• Check to see if they've agreed to be monitored for their compliance with the HON Code of Conduct for Medical Web Sites (see link below).

• Check to see how frequently it's updated.

• Do a Google search to see who links to it.

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• AARP Webplace: Evaluating Medical Information
  on the Internet
  http://www.aarp.org/confacts/health/wwwhealth.html

• CDC Current Health-Related Hoaxes and Rumors http://www.cdc.gov/hoax_rumors.htm

• Google http://google.com
  results are displayed in order of the number of times sites are linked in by other sites, a measure of how highly a site is regarded..

• HON Code of Conduct for Medical
  and Health Web Sites
  http://www.hon.ch/HONcode/Conduct.html?HONConduct719879
  The red and blue HON Code icon at the upper right of the page can only be displayed by web sites that have agreed to be monitored for compliance with the principles described on the rest of this page.

• QuackWatch
  http://www.quackwatch.com/
  An excellent example of what a good medical site should do: establish its authority, explain how it can give its information away for free, update its information regularly. And in this case, provide valuable protection against fraud and hoaxes.

• The Virtual Chase: Groups That Alert the Public to Internet Fraud, Fanaticism and Bad information
  http://www.virtualchase.com/quality/alert.html
  For all kinds of fraud, not just health fraud.

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  Five Key Sites

  If somebody said, "Cut to the chase, give me just a few sites that will measurably improve my understanding of health issues and maybe my health," these are the ones I'd go with.

• Medline Plus http://medlineplus.gov/
  The best single one-stop source. Includes authoritative info for laypersons on medical conditions, drug info, medical dictionaries and encyclopedias, doctor finders, and hospital finders.

• Best Doctors http://www.bestdoctors.com/
  There's a lot of good free information here, but for a fee you get the results of a survey that asked doctors, "If you had a close friend or loved one who needed a neurological surgeon (for example), to whom would you refer them?" As always, before registering, read the privacy policy to find out how your personal information will be used and protected. One nice feature: questions you might ask your doctor.

• Diagnostic Tests: the Family Health Guide http://www.health.harvard.edu/fhg/diagnostics.shtml
  Answers the doctors rarely have time to give you about the test they've scheduled you for: what it's for, how to prepare for it, what will happen, what risks there may be, what you have to do afterward, and how long before you get the results.

• Disease and Disorder Support Groups, Ask NOAH http://www.noah-health.org/english/support.html
  Because support groups are where you go for emotional support and help from people who have gone through what you're going through

• Prescription Drug Reference
  http://www.healthsquare.com/drugmain.htm
  One of the PDR guides from a trustworthy medical publisher, a searchable and alphabetical subject guide to medications and their purposes, side effects, contraindications, interactions with other drugs and foods, recommended dosage, results of overdose. If everybody made a list of everything in their medicine cabinets and checked each drug out here (or in the other guides listed below), lives might well be saved.

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  RELIABLE PORTALS FOR HEALTH INFORMATION

  These are all sites where medical specialists have chosen authoritative resources in specific subject areas. There's a lot of overlap between these sites, though each site has some unique features. But ALL of them can be trusted.
  
  

• AARP: Health and Wellness
  http://www.aarp.org/indexes/health.html
  Includes excellent information on aging well and staying fit, health insurance, medicare, and caregiving. Note also the AARP Research Center
  (http://research.aarp.org/), which sponsors research
  on all aspects of aging, and the AARP Guide to
  Internet Guide to Aging Resources
  (http://www.aarp.org/cyber/sitealph.htm)

• Administration on Aging
  http://www.aoa.dhhs.gov/quickindex.html

• Familydoctor.org
  http://www.familydoctor.org/
  Searchable medical guide to self-care, family health facts and handouts, drug information; the herbal and alternative remedies section contains important information about interactions with drugs and food, and other contraindications for use. Includes Spanish language resources.

• Hardin Metadirectory of Internet Health Sources
  http://www.lib.uiowa.edu/hardin/md/
  From the University of Iowa's Hardin Library. An alphabetical guide to comprehensive, medium and selective small subject directories for different medical conditions on the web.

• Healthfinder: a Gateway to Consumer Health
  and Human Services Information
  http://www.healthfinder.gov/
  A searchable, attractive user-friendly site, divided into news, hot topics, tools (libraries, dictionaries, etc.), smart choices (prevention, choosing quality care, etc.)

• Health News Directory
  http://www.healthnewsdirectory.com/healthNews/directory/
  links you to reliable health news sites for a variety of medical conditions as well as to news on fitness, nutrition, pain, and men's, women's, and children's health; also includes finders for doctors, hospitals and clinical trials.

• HealthWeb
  http://healthweb.org/
  A set of carefully chosen evaluated web resources.

• Male Health http://www.malehealth.co.uk/
  Includes news, faqs on common male health problems, a "healthy living center," a self-examination test, and more. Key word searchable.

• Mayo Clinic Health Oasis
  http://www.mayohealth.org/
  Includes an A-Z on conditions, drug and first-aid info, answers from Mayo specialists, and a section on Taking Charge of Your Health.

• Medline Plus http://medlineplus.gov/
  The best single one-stop source. Includes authoritative info for laypersons on medical conditions, drug info, medical dictionaries and encyclopedias, doctor finders, and hospital finders.

• Mental Help http://www.mentalhelp.net/
  Includes news, a glossary of mental health terms, a symptoms list, info on common disorders and treatment, an archive of previous articles, and help in finding treatment. It also includes resources for professionals. All of this is keyword searchable. The site abides by the HON code of ethics

• NOAH: New York Online Access to Health
  Home Page http://www.noah-health.org/
  Notable because all its resources are available in Spanish as well as English. Information not only on medical conditions, but also on patients' rights, support groups, pain, child health, home safety and injury prevention

• Reuters Health News
  http://www.reutershealth.com/

• Toll-Free Hotlines, Health Information http://sis.nlm.nih.gov/hotlines/index.cfm

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  FINDING HEALTH ARTICLES IN ONLINE MAGAZINES AND DATABASES

• CAM on PubMed (Complementary and Alternative Medicine)
  http://www.nlm.nih.gov/nccam/camonpubmed.html)
  Medical research on alternative therapies and herbal and nutritional approaches.

• FindArticles.com http://www.findarticles.com/PI/index.jhtml
  Index of magazine and journal articles available free on the web

• Medical Journals: WebMedLit
  http://webmedlit.silverplatter.com/
  "Providing efficient access to the best medical journals on the web."

• PubMed: Medline
  http://www.ncbi.nlm.nih.gov/PubMed/medline.html
  Search for abstracts from articles in medical journals.

• PubMed Central http://www.pubmedcentral.nih.gov/
  Limited full-text article retrieval.

  
  
  IF YOU FIND REFERENCES TO ARTICLES THAT ARE NOT ONLINE, ASK YOUR LIBRARIAN TO GET THEM FOR YOU.

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  COPING WITH DISABILITIES

• Disability, Aging and Long-Term Care
  http://aspe.hhs.gov/daltcp/home.htm
  Includes information on assisted living, medicaid, hospices, managed-care, medicaid buy-ins, etc.

• disAbility.Direct http://disabilities.gov/
  "bringing information on US federal programs, services and resources to Americans with disabilities and their families" on civil rights, health, housing, and more.

• Family Village: A Global Community
  of Disability-Related Resources
  http://www.familyvillage.wisc.edu/index.htmlx
  Includes a library of materials on specific conditions, information on recreation, research, religious resources, community health care resources, etc.

• National Rehabilitation Information Center's Disability Information Center
  http://www.naric.com/search/index.html
  Includes searchable databases and prepared information on frequently requested topics such as assistive technology, caregiving, home modification, mobility issues, etc.

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  NUTRITION AND FITNESS INFORMATION

• American Dietetic Association Site Map
  http://www.eatright.org/sitemap.html
  This site provides information on a variety of nutrition
  resources for the consumer. It includes "Tips of the Day" and "In the News" (breaking stories about nutrition and health). This site includes excellent links for consumers and professionals.

• Delicious Decisions, from the American Heart Association http://deliciousdecisions.com/
  Advice on healthy lifestyle and fitness are included here as well, but the heart of this site is the cookbook of healthy tasty meals.

• Tufts University Nutrition Navigator
  http://navigator.tufts.edu/
  Evaluates and describes nutrition sites.

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  SUPPORT GROUPS

  A WORD OF WARNING: Support groups are composed of patients like yourselves. They can tell you far better than the doctors can what it is like to live with the condition, and how the treatments affect you physically and emotionally. However, beware of anybody discussing miracle cures; even if they are not con artists, even if they are well-meaning people who absolutely believe what they are saying about a product or therapy, ASK YOUR DOCTOR about it.

• Disease and Disorder Support Groups, Ask NOAH http://www.noah-health.org/english/support.html

• Yahoo! Health: Diseases and Conditions:
  http://www.yahoo.com/Health/
  Diseases_and_Conditions/
  Find your medical problem, either in alphabetical order or by classification (allergies, autoimmune diseases, etc.). Look through the listings; you can also look for subheadings like "Personal experiences" and "support groups"

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  FINANCIAL ASSISTANCE AND CAREGIVING

• AgeNet Eldercare Network
  http://agenet.agenet.com/
  Info on drugs, legal issues, insurance, finances, caregiving, etc.

• American Hospice Foundation http://www.americanhospice.org/

• disAbility Direct http://disabilities.gov/
  "bringing information on US federal programs, services and resources to Americans with disabilities and their families" on civil rights, health, housing, income support, and more.

• Elder Law Answers: Medicaid planning, Medicare, Nursing home rights
  http://www.elderlawanswers.com/
  Offers faq files, a customized search engine for elder law, a glossary, news, checklists for selecting nursing homes, advice on estate planning, and more. Free e-mail newsletter and attorneys' answers to questions by e-mail, with their guarantee of privacy.

• Medicaid Information
  http://www.hcfa.gov/medicaid/medicaid.htm
  Official answers.

• Nursing Home Compare
  http://www.medicare.gov/NHCompare/home.asp
  Search by state, select the nursing home that interests you, and view information on the home, its clientele and the latest inspection results.

• Official U.S. Government Site for Medicare Information
  http://www.medicare.gov/

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  ONLINE MEDICAL REFERENCE BOOKS

• Best Doctors http://www.bestdoctors.com/
  Results of a survey that asked doctors, "If you had a close friend or loved one who needed a neurological surgeon (for example), to whom would you refer them?" Requires registration for use and a fee for access to the database. As always, before registering, read the privacy policy to find out how your personal information will be used and protected.

• Complete Home Medical Guide
  http://cait.cpmc.columbia.edu:88/texts/guide/all.html
  From the Columbia University College of Physicians and Surgeons. Includes extensive material on wellness, the specific health concerns of men, women and children, common signs and symptoms and their possible meaning, diagnostic procedures, drug information, and more.

• Diagnostic Tests: the Family Health Guide http://www.health.harvard.edu/fhg/diagnostics.shtml
  Answers what the test is for, how to prepare for it, what will happen, what risks there may be, what you have to do afterward, and how long before you get the results.

• Lab Tests Online http://www.labtestsonline.org/

• MDAdvice.com Health Library: Prescription and non-Prescription Drugs http://www.mdadvice.com/library/drug/drug.html
  Remember, over-the-counter drugs and herbals and vitamins have side effects and drug interactions as well. Check out your non-prescription drugs here.

• Medterms.com http://www.medterms.com/
  One of many medical dictionaries available on the net; this is clearer than most for those without medical training.

• RxList http://www.rxlist.com/
  Search by keyword for drug information, including what its purpose is, indications for its use, side effects, interactions with other drugs, how it should be used, and any special instructions. There's also a section on alternative medicine.

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  HISPANIC HEALTH AND SPANISH-LANGUAGE INFORMATION

• Bien! Border Health Information Network http://www.bienhealth.org/
  Includes Consumer health, resources for health providers, and Informacíon en Español

• Espanol Healthfinder http://www.healthfinder.gov/espanol/
  The Spanish language NIH gateway to search for health publications that are also in Spanish.

• HealthWeb: Minority Health http://healthweb.org/browse.cfm?subjectid=53
  Includes general resources and specific ones by ethnic group.

• HispanicHealth.org Site Map http://www.hispanichealth.org/SiteMap.htm
  Includes helplines, publications, and links.

• MedlinePlus: Hispanic American Health http://www.nlm.nih.gov/medlineplus/hispanicamericanhealth.html
  

• NCLR - Hispanic Health Issues and Information http://www.nclr.org/policy/health.html

• NOAH: New York Online Access to Health http://www.noah-health.org/
  Entire site is available in Spanish.

• Online Resources for Hispanic Health http://www.library.uthscsa.edu/clhin/resources/index.cfm?Topic=Hispanic%20Health
  Includes links to Spanish language fact files on various medical conditions, the 1994 Merck Manual in Spanish, and also information for medical professionals on how to deal with patients who speak only Spanish.

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  SOME GOODIES JUST FOR HEALTH PROFESSIONALS

• National Guidelines Clearinghouse http://www.guidelines.gov/
  " a public resource for evidence-based clinical practice guidelines."

• Palmtop Medicine http://www.cbil.vcu.edu/pda/
  Full of news and product links for the use of PDAs for portable instant medical or patient information

• National Organization for Rare Disorders http://www.rarediseases.org/
  Includes a searchable and browsable database of disorders.

• TRIP Database http://www.tripdatabase.com/
  The TRIP Database searches over 55 sites of high-quality medical information. The TRIP Database gives you direct, hyperlinked access to the largest collection of 'evidence-based' material on the web as well as articles from premier on-line journals such as the BMJ, JAMA, NEJM etc

• Virtual Hospital http://www.vh.org/
  Note especially the Patient Simulations in the information for healthcare providers.

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  IMPROVE YOUR SEARCHING TECHNIQUE

• Use Google as your search engine of choice http://google.com/ because it tends to place well-thought of resources first.

• Tell the search engine what a good answer is going to look like. Don't just say "anemia"; tell it what you want to know about arthritis. Say arthritis + symptoms, or FAQ, or treatment, or exercise, or anatomy.

• Sometimes what you need is images or videos or animation -- what does your shoulder joint look like? How do you do the exercises? Type in your term in Google and click on the "images" button.

• Search in a more restricted universe. If you're looking for more information on arthritis, for instance, you could use the search engine on the Arthritis Foundation's web page.

• If you find one thing on Google that's exactly what you had in mind, use the "similar pages" feature to reshuffle the deck and find more like it.

• If you have a continuing medical condition, you may want to simply set your start page on your browser to the page for the association that monitors that condition -- the American Heart Association or the Arthritis Foundation, or whatever.

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  STRATEGIES FOR FINDING HEALTH INFORMATION

  When you're looking for information on, or by way of, the net, remember that there are many different ways of getting there. Each will produce different results, though there should be large areas of agreement. Remember, AN answer is not the only possible answer.

  If one method doesn't work, or if you need more information than that method found for you, try a different approach or a different search tool: if you used an internet search engine, try using one of the full-text magazine article databases, or looking in a directory like Librarians' Index to the Internet. If you're looking for answers to questions, you can look for FAQ files, or for bulletin boards or "ask an expert" sites where you can ask your questions directly.

  Here are some kinds of questions you might ask, and alternate approaches to finding reliable answers to them on or by way of the net.
  
  
  

  1. You need to know the basic information about a recently diagnosed medical condition: what is it, what are its symptoms, how is it treated, can it be cured, etc.

     A. Go to Medline Plus, which has good answers to all the frequently asked questions.

     B. Go to a medical encyclopedia, such as the Complete Home Medical Guide.

     C. Go to an organization devoted to a particular medical condition, like the American Cancer Society or the American Heart Association, or one of the government agencies like the National Cancer Institute or the National Institute on Aging.

     D. Go to any of the good general medical sites like Mayo Clinic or Healthfinder or Familydoctor.com

     E. Use Google -- http://google.com/ -- and type in the name of the medical condition and FAQ, as in diabetes + FAQ

     
     
     
     
  2. It's a good idea to go through your medicine cabinet and check out all the medications you're taking to find out what are they, what do they do, what side-effects they have, what other drugs and foods they may conflict with, what contraindications there are for using them.

     A. From Medline Plus, from the navigation bar at the top, select "Drug Information. Search for your specific medications.

     B. Go to RxList or Prescription Drug Reference.

     C. For recent developments in regard to the drug, check out Health News Directory.

     D. Use Google and type in the name of the drug and "side effects", as in dilantin + "side effects"

     
     
     
     
  3. You want to know what it's going to be like living with the medical condition, so you want to find a support group or, failing that, an online bulletin board or discussion group.

     A. Start with your local hospital, which may be sponsoring local groups.

     B. Check your yellow pages. A local group of people you can talk with in person is better than online for this purpose.

     C. Medline Plus lists national organizations for each condition; most of these link in support groups and bulletin boards.

     D. NOAH has an excellent list of support groups for various medical conditions.

     E. In the unlikely event there's nothing online, check your library's copy of the Encyclopedia of Associations.

     F. Use google and type in the name of your condition and support group, as in arthritis + "support group"

     
     
     
     
  4. You want to read articles in consumer health magazines or medical journals on your topic.

     A. Use the article databases that your library pays for and offers online free of charge with the input of your library card number. Ask your librarians for more information on using the databases.

     B. Use FindArticles or MagPortal to find full-text articles available on the net.

     C. For a comprehensive search of medical journals, use PubMed Medline. The articles are not there full-text, only abstracts describing what the articles say, but your librarians can help you get the articles you need -- ask them about interlibrary loan.

     
     
     
     
  5. You want to check out stories you've heard recently about medical dangers, or new miracle cures. Beware of health news reported by the news media; try to verify it in better informed medical sources.

     A. Check the Health News Directory.

     B. Check Medline Plus, which offers condition-related news.

     C. Check the web site of the organization concerned with the particular medical condition involved -- they always evaluate and report current news regarding their topic.

     D. Check the CDC's Current Health-Related Hoaxes and Rumors.

     
     
     
     
  6. Your doctor has asked you to come in next Monday morning for a diagnostic test, but hasn't told you much about it.

     A. Check it out in Diagnostic Tests: the Family Health Guide

     B. Use Google and type in the name of the test plus FAQ, as in "bone density test" + FAQ

     
     
     
     
  7. You want to find a good specialist or hospital to go to for your medical problem.

     A. Use the doctor finder and hospital finder on Medline Plus

     B. Spend the money to get a recommendation from Bestdoctors.com.

     
     
     
  8. Where can I find reliable information about alternative therapies -- herbals or vitamins -- for my medical condition?

     A. Check them out in Non-Prescription Drugs, from Humana and WebMD, or MDAdvice.com Health Library: Prescription and non-Prescription Drugs.

     B.Use CAM on PubMed (Complementary and Alternative Medicine) to find scientific research on alternative treatments.

     C. Check out QuackWatch to see if the alternative approach that interests you is discussed.

     D. Do a search through FindArticles or MagPortal, or in your library's full-text databases to find articles on it.

     D. See what the primary organization involved with the medical condition says about that approach.

  
  
  

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