Finding reliable patient education information on the internet


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Internal Medicine Noon Conference 5/5/2010

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  • The first thing to determine is that is the purpose of the Web page? Ask class for the reasons people put up web pages.
  • Each of these alone is meaningless, but together they create solid guidelines for evaluation. If you cannot answer the following questions, the web site your patient/patron is looking at is suspect! Content on the Internet is unregulated, and therefore, anyone can publish anything on the Internet. There is sound medical information on the Internet along with dangerous information. You need to be able to tell the difference! Ask yourself the following: Why did the person create the page? What’s in it for them? Are they trying to sell me something?
  • Ask yourself the following: If the information is factual, the basic question is whether the facts are accurate. Unless the information appears in a refereed journal subject to peer review, you are depending on the authority and expertise of the author and the sources the information is drawn from. Are the sources of the information clearly given? If the information is dawn from the writer’s own experience, was it based on simple observation or on carefully designed research
  • Male Pregnancy take a few minutes to check it out for accuracy. Where is the Medical Center? About us: what can we find out here? Accuaracy of pregnancy statements? What about the Time magazine cover? What type of site is this? (spoof) What is its purpose? (entertainment)
  • Be sure to ask yourself these questions: Do you know who the author of the information is? An unsigned piece of information does not have authority of a signed piece. If it is unsigned, is it posted in a usually authoritative place (at the National Institutes of Health, for example) What can you tell about the author? Is the author a student, physician, or firefighter? Does the author bring any biases in posting the information
  • The tilde. Information that has the backing of an organization has better quality control than an individual, who has no one to answer to. Does anyone know what a ~ stands for in a URL? (~ generally means that the information is from an individual and is not necessarily endorsed by the organization hosting the site.) The Domain. “Dot coms” are not necessarily bad, “dot orgs” are not necessarily good! Look at the content. Also, beware of domains that indicate the that health sites originates outside the US. These may suggest treatment options that are not generally available in the US (Check the URL for .uk, .de, etc.) Contact information. The more information an author provides about him/herself, the better. Be skeptical about names of organizations that sound prestigious; the “National Alliance for Cancer Treatment Analysis” may sound like a reputable organization, bit it could be out of someone’s basement. About us. Always try to find the “about us” link to determine the authority and agenda of a particular site.
  • Questions for discussion: Check URL: ~, what is (a free web site provider) Who’s the author, and what are his/her credentials? Where did you find this out? (Disclaimer) Does the information appear to be accurate? Why? What type of site is this? (personal) What is its purpose? (To provide information and support for other Tourette patients) When might a Web site written by a person who has the disease be helpful? (for support, to share information about living with the disease).
  • Questions to ask: Can you judge the author’s purpose in posting the information? If the author’s purpose is to persuade you or sell to you, you must judge the information accordingly. For example, an evaluation of a pharmaceutical is questionable if it is posted on a competing pharmaceutical manufacturer’s site. It is more credible if its posted by a truly independent laboratory. Who paid for the Web page?
  • Questions to discussion: Who is the author? Is s/he an authority? Who is the sponsor? Does the information appear to be accurate? What is DHMO? Is any bias evident? What type of site is this? (spoof) What is its purpose?
  • Questions to ask: Is the information dated or can you tell from the content when it was written? Is the information likely to change? Is it recent enough to be useful?
  • Questions for discussion: What dates can you find on the page? (c. 1995) Has much changed about this topic since 1995? Who is the author? Is s/he an authority? Does the information appear to be accurate? What type of site is this? What is its purpose?
  • Many health sites are not comprehensive. The information they give may be accurate, but important information may be left out. Don’t stop with a single site unless you can answer these questions to your satisfaction. How does this information compare with other sources (including published print sources) on the same topic? Is a better source available? (Consider varying your approach to searching for relevant information.) Does the site have a disclaimer that describes any limitations, purpose, scope, currency or authority of the information?
  • Click on “symptom correlation” and type in “runny nose” Questions for discussion: What conditions are associated with a runny nose, according to this database? (Wegener’s Granulomatosis) What other conditions could be associated with a runny nose that aren’t included here?
  • Finding reliable patient education information on the internet

    1. 1. Finding Reliable Patient Education Information on the Internet Mary J. Markland SE Clinical Campus Librarian University of North Dakota School of Medicine & Health Sciences [email_address] May 5, 2010
    2. 2. Pretest <ul><li>T F All health information on the web is accurate and reliable. </li></ul><ul><li>T F Reference librarians can provide advice about health information. </li></ul><ul><li>T F About half of Internet health seekers thoroughly check the source and timeliness of information, and are vigilant about verifying a site’s information every time they search for health information. </li></ul><ul><li>Name three criteria for evaluating a web site. </li></ul>
    3. 3. Pew Internet & American Life Results <ul><li>U.S. adults living with chronic disease are significantly less likely than healthy adults to have access to the internet (62% vs. 81%). </li></ul><ul><li>Once online, having a chronic disease increases the probability that someone will take advantage of social media to share what they know and learn from their peers. </li></ul>
    4. 4. More Results <ul><li>When asked, &quot;Now thinking about all the sources you turn to when you need information or assistance in dealing with health or medical issues, please tell me if you use any of the following sources...&quot; </li></ul><ul><ul><li>86% of all adults ask a health professional, such as a doctor. </li></ul></ul><ul><ul><li>68% of all adults ask a friend or family member. </li></ul></ul><ul><ul><li>57% of all adults use the internet. </li></ul></ul><ul><ul><li>54% use books or other printed reference material. </li></ul></ul><ul><ul><li>33% contact their insurance provider. </li></ul></ul><ul><ul><li>5% use another source not mentioned in the list.  </li></ul></ul>
    5. 5. And More…. <ul><li>52% of all online health inquiries are on behalf of someone else </li></ul><ul><li>Two-thirds of e-patients talk with someone else about what they find online, most often a friend or spouse. </li></ul><ul><li>41% of e-patients have read someone else's commentary or experience about health or medical issues on an online news group, website, or blog. </li></ul><ul><li>24% of e-patients have consulted rankings or reviews online of doctors or other providers. </li></ul><ul><li>24% of e-patients have consulted rankings or reviews online of hospitals or other medical facilities. </li></ul><ul><li>19% of e-patients have signed up to receive updates about health or medical issues. </li></ul>
    6. 6. What do patients want to know? <ul><li>Is it cancer? </li></ul><ul><li>If I’m going to die, how will I die and will it hurt? </li></ul><ul><li>Why do I have this disease? </li></ul><ul><li>Will other people in my family get this disease? </li></ul><ul><li>How can I maintain my lifestyle and not be a burden to my family? </li></ul><ul><li>Where is my doctor from/went to school? </li></ul>
    7. 7. What are they looking at and is it any good?
    8. 8. Types of Web sites <ul><li>What is the purpose of the Web page? </li></ul><ul><li>Advocacy (American Heart Association) </li></ul><ul><li>Business/marketing (Pfizer) </li></ul><ul><li>Informational (National Center for Health Statistics) </li></ul><ul><li>News (CNN) </li></ul><ul><li>Entertainment (Official Star Wars Fan Club) </li></ul>
    9. 9. ABCs of Evaluation <ul><li>Accuracy </li></ul><ul><li>Authority </li></ul><ul><li>Bias </li></ul><ul><li>Currency </li></ul><ul><li>Coverage </li></ul>
    10. 10. 5 ABCs <ul><li>Each of these alone is meaningless. </li></ul><ul><li>Together they create solid guidelines for evaluation. </li></ul><ul><li>If you cannot answer the following questions, the web site you’re looking at is suspect! </li></ul>Cartoon by Peter Steiner. The New Yorker , July 5, 1993 issue (Vol.69 no. 20) page 61
    11. 11. Accuracy <ul><li>Is the information accurate? </li></ul><ul><li>Remember: </li></ul><ul><ul><li>Anyone can publish on the web </li></ul></ul><ul><ul><li>Many web pages are not reviewed or verified by editors or peers </li></ul></ul><ul><ul><li>Web standards to ensure accuracy don’t exist. </li></ul></ul>
    12. 12. Accuracy example
    13. 13. Authority <ul><li>Is the author an authority on the subject? </li></ul><ul><li>Remember: </li></ul><ul><ul><li>It is often difficult to determine the authorship of Web pages. </li></ul></ul><ul><ul><li>If a name is listed, his/her qualifications are frequently absent. </li></ul></ul><ul><ul><li>Check if the Web page has the backing of a well-established organization, institution, or agency. </li></ul></ul>
    14. 14. What can you tell from the URL? <ul><li>The Tilde </li></ul><ul><ul><li>~ </li></ul></ul><ul><li>The Domain </li></ul><ul><ul><li>“ Dot coms” </li></ul></ul><ul><li>Contact Information </li></ul><ul><li>About Us </li></ul>
    15. 15. Authority example
    16. 16. Disclaimer
    17. 17. Bias <ul><li>Does the author bring any biases in posting the information? </li></ul><ul><li>Remember: </li></ul><ul><ul><li>Web pages often are “soapboxes” </li></ul></ul><ul><ul><li>Goals of the author aren’t clearly stated </li></ul></ul><ul><ul><li>Watch out for the emotional “kick”…photographs, exclamation points, huge fonts </li></ul></ul>
    18. 18. Bias Examples Hosted by Stormfront Center for Consumer Freedom Indoor Tanning Association
    19. 19. Reliability Check <ul><li>Variety of information </li></ul><ul><ul><li>Health Conditions </li></ul></ul><ul><ul><li>Living Better </li></ul></ul><ul><li>Meets HON Code standards </li></ul><ul><li>Advertisements </li></ul><ul><li>Sponsored Pages </li></ul><ul><li>Polls that collect data </li></ul><ul><li>Quizzes from drug companies </li></ul>
    20. 20. What’s Wrong with Sponsors?
    21. 22. Currency <ul><li>Is the information current and timely? </li></ul><ul><li>Remember: </li></ul><ul><ul><li>Dates are not always included </li></ul></ul><ul><ul><li>If dates are included </li></ul></ul><ul><ul><ul><li>Date created </li></ul></ul></ul><ul><ul><ul><li>Date revised </li></ul></ul></ul><ul><ul><ul><li>Date the page was placed on the Web </li></ul></ul></ul>
    22. 23. Currency example
    23. 24. Coverage <ul><li>Many health sites are not comprehensive. </li></ul><ul><li>The information may be accurate but </li></ul><ul><li>important information may be left out. </li></ul><ul><li>Remember: </li></ul><ul><ul><li>How does this information compare with other sources on the same topic? </li></ul></ul><ul><ul><li>Is a better source available? </li></ul></ul><ul><ul><li>Does the site have a disclaimer? </li></ul></ul>
    24. 25. Coverage example
    25. 26. Privacy <ul><li>What kinds of data does the site collect? </li></ul><ul><li>What does it do with the data? </li></ul><ul><li>Does it use Cookies? </li></ul><ul><li>Can you opt-out? </li></ul>
    26. 27. Mayo Clinic
    27. 30. Evaluation of Health Resources
    28. 31. Finding Reliable Health Resources
    29. 32. Tips <ul><li>Put your phrase in quotation marks </li></ul><ul><ul><li>“ lung cancer”, “heart attack” </li></ul></ul><ul><li>Use medical terms if possible and be specific </li></ul><ul><li>Use Google Health rather than Google </li></ul><ul><ul><li> </li></ul></ul><ul><li>Use Google Directory </li></ul><ul><ul><li> </li></ul></ul>
    30. 33. Google Health
    31. 35. Google Directory
    32. 37. MedlinePlus <ul><ul><li>No Advertisements! </li></ul></ul><ul><ul><li>No Sponsors! </li></ul></ul><ul><ul><li>Little use of Cookies and data isn’t saved on your computer </li></ul></ul><ul><ul><li>Don’t sell your information to 3 rd parties </li></ul></ul>
    33. 38. MedlinePlus Resources <ul><ul><li>Links to reliable, understandable health websites </li></ul></ul><ul><ul><li>Health Topics for Seniors </li></ul></ul><ul><ul><li>Easy-to-read articles </li></ul></ul><ul><ul><li>Slideshows that have sound and contrast </li></ul></ul><ul><ul><li>Medical dictionary </li></ul></ul><ul><ul><li>Medical encyclopedia with large illustrations </li></ul></ul><ul><ul><li>Links to local services </li></ul></ul><ul><ul><li>English, Spanish and other languages </li></ul></ul>
    34. 43. Drugs & Supplements
    35. 44. Encyclopedia Dictionary
    36. 45. Directories
    37. 46. News
    38. 47. Interactive Tutorials
    39. 48. Multiple Languages
    40. 49. NIH MedlinePlus Magazine <ul><li>Free subscription </li></ul>
    41. 50. Senior Health
    42. 51.
    43. 52. CAPHIS/MLA Top 100 List
    44. 53. AAFP
    45. 54. Mayo
    46. 55.
    47. 56. MedHelp
    48. 57. AMA Physician Finder
    49. 59. American Board of Medical Specialties
    50. 61. <ul><li> </li></ul>
    51. 64. Oncolink