Outline and Notes from "Beyond an Apple a Day: Finding Health Information Online"

Beyond an Apple a Day: Finding Health Information Online

December 11, 2011
Park Slope Food Coop

1. Introduction (10 minutes est.)

a. Discussion of people’s behavior when looking for health information online. The latest Pew Internet & American Life project's report on health (dated 11/22/11) found that 80% of internet users have looked for health information. The top three searches are for a specific disease, a medical procedure, or finding a doctor. How does that compare with the participants' experiences?

b. A recent study by the Center for Studying Health System Change found that although there has been an overall decline in people seeking health information, the use of the Internet for what health-information seeking there is has actually risen.

c. Discussion of challenges to finding health information online. Ideas to present: assessing if the information is accurate/trustworthy; understanding unfamiliar medical terminology; keeping information confidential/private/anonymous; and recognizing that health (disease) can be an emotional topic.

Some comments from the participants today:
I want to find independent, objective sites.
I look for alternatives.
The information I find is often lengthy and not written for the layperson.

d. This workshop will focus on pre-screened health web sites. All sites to be discussed have been saved in Delicious (simple URL is tinyurl.com/pscoophealthinfo). There will also be discussion about how to evaluate a website.

2. What Do You Want to Know? General health (15 minutes est.)

a. MedlinePlus: Extensive Web portal, from the National Library of Medicine and the National Institutes of Health. Overview of site, including Spanish language mirror site. Search for diabetes and show different sections of the health topic page, including multilingual resources. Search for metformin in Drugs & Supplements section. Videos are available – surgeries, anatomy, blood flow, etc. Show Understanding Medical Words tutorial. Show Question Builder calculator. Show that participants can order a free MedlinePlus magazine.

The health statistics portion of MedlinePlus led to a participant question about how to find statistics on health issues related to the Indian Point nuclear facility. Our suggestion was to try a state public health agency.

b. NOAH: New York Online Access to Health: Volunteer (librarian) run. Created before Medline Plus. Show Local Health Resources. Show Physical Fitness & Exercise section.

c. HON Foundation: Explanation of HONcode and its eight principles. Search for depression. Also search for HIFU (high frequency ultrasound), a treatment for prostate cancer that is not approved in the U.S. but is used elsewhere. HON has a more international perspective.

d. Toll Free Telephone Numbers: Show Cancer and GLBT Health, among other topics.

3. What Do You Want to Know? Choosing a doctor or health care facility (15 minutes est.)

a. NY State Physician Profile: Show a specific physician. Also search for a specialty, e.g. sleep medicine.

b. How to Choose the Right Physician: Show link to complaint form.

c. Professional Misconduct: Search or browse by License Type.

d. NYS Hospital Profile: Show the Choosing a Hospital guide. Search for Brooklyn hospitals and overall surgical care improvement. Look at Coney Island Hospital in more detail. You can also compare all.

There was a question about how this data is collected. It’s a combination of self-reported data (from patient surveys, etc.) and data collected by the Joint Commission for accreditation purposes.

e. Medicare Hospital Compare: Search for hospitals near zip code 11215.

f. Medicare Nursing Home Compare: Show the Nursing Home checklist and Guide to Choosing a Nursing Home (large PDF, slow to load). Search for nearby nursing homes and then sort by overall rating. See full view for the top rated institution.

4. What Do You Want to Know? Medications (10 minutes est.)

a. NLM Pillbox: This is a beta site and quite incomplete. Example: Search for an oval yellow scored pill, 15 mm. Many results do not have photos.

b. Drugs.com: This is a commercial site with lots of ads! But it has a great pill identifier. Search for an oval yellow pill.

c. Drug Digest: Use Check Interactions using a number of drugs and supplements. Also use Compare Drugs for depression. Look at Side Effects for Zoloft, then add other drugs to compare. Another sample comparison: Lipitor, warfarin (tablets), Synthroid (tablets), and St. John’s Wort (capsules). Note that the Side Effects tool does not include all drugs.

5. What Do You Want to Know? Complementary and alternative health (10 minutes est.)

a. NCCAM: A project of the National Institutes of Health (though the U.S. government has come late to complementary and alternative health). Search for one supplement (e.g cinnamon) and one modality (e.g. homeopathy). Show What Is CAM? including how to choose a CAM provider.

b. About Herbs: A project of Memorial Sloan-Kettering Cancer Center. Show information for laetrile and St. John's wort.

6. What Do You Want to Know? Nutrition (5 minutes est.)

a. Harvard's Healthy Eating Plate: Show how it compares with USDA's MyPlate.

b. Dietary Supplements Labels: Search for Vitamin D. Sort by Amount/Unit.

7. Can You Trust This Web Site? (15 minutes est.)

a. Explain the five components of a good web site (accuracy, authority, bias, currency, coverage). There’s really no such thing as complete “objectivity,” but we can do our best to figure out whether we should be putting trust into a given website.

Some questions to ask:

  • Who runs the site? Is there a sponsor who paid for the site? Is it easy to find out how to contact the people or organization behind the site?
  • What is the purpose of the site?
  • What do they want from you?
  • Are sources listed for the information on the site?
  • Who evaluates the information on the site? ("Editorial board," "selection policy," "review process," etc.)
  • Does the site make unbelievable claims? Is the tone very emotional?
  • When was information last updated?
  • Does the site ask for your personal information? Is there a privacy policy?

b. Evaluate websites together

  • www.dhmo.org
    Hoax site about the dangers of dihydrogen monoxide, a.k.a. plain water.
    Can search in Google or Scroogle: dihydrogen monoxide -site:dhmo.org to get quick results from elsewhere on the Web that demonstrate the fakeness of this site. (Another hoax website is www.wemarket4u.net/glucobate, which was created by the FTC.)
  • www.medhelp.org/posts/Fibromyalgia/can-adderal-help/show/1341101
    You should be very wary of trusting information posted in community support forums, but sometimes community support, as opposed to hard facts, is what you’re looking for. This particular thread is also interesting because of one of the posters' nuanced approach to claims.
  • www.medical-library.net
    Some of the medical information here looks authoritative and accurate (but possibly dated). The site's primary purpose, however, seems to be doctor's office advertising. The design is rather unsophisticated and "busy," and there's no "About Us" page. Look under Library Articles for the Autism article. It's undated, and it's unclear who the author is and what his/her qualifications are on this topic.
  • www.healthfree.com
    This website sells nutritional supplements, so it has a lot of bias. There is a section on "Articles," but it seems to be a gateway to selling the products. Look under Articles/Site Map for the Candida article. It's undated, there are no sources, and there's an ad for a related product in the middle.
  • www.burzynskiclinic.com
    This one is not unequivocally "bad," and its production values are far more impressive than other questionable sites. The About section is good, and you can check PubMed to find that Dr. Burzynski is a published author. The patient testimonials seem believable. On the other hand, it is clearly a business that wants to attract new clients (patients). It also shows that terminal cancer patients, for whom standard treatment methods have failed, might be very attracted to the promise of this clinic, even if the claims are not 100% substantiated.
  • curezone.com
    This website has authority issues (not to mention the graphic design and user interface!) because it is essentially a series of forums where users are allowed to self promote their businesses. It shows that peer groups can be a popular source of support, if not information.
  • 8. Further Research (5 minutes est.)

    a. Brooklyn Public Library: Books such as Top Doctors: New York Metro Area and The Pill Book. Subscription databases, plus listings of other useful databases and sites on the open Web (e.g. MedlinePlus, MSK’s About Herbs). You need your library card and PIN to access the subscription ones, where you can find articles from journals and magazines. Search in the Nursing & Allied Health Collection database for asthma and diet. Find the article "Unlocking the mysteries of the health-protective effects of olive oil” and then look for it on the newsletter's own website. The full text is not available on the website.

    b. New York Public Library's Health Information Center: It no longer exists as a separate collection; the materials have been integrated into the general collection at Mid Manhattan. The web page is an archived one, but it is still pretty good. Unfortunately, this branch no longer does interlibrary loan (ILL) for medical journal articles.

    c. PubMed/MEDLINE: A freely-accessible database where you can find thousands of specialized academic articles.

    9. Questions, evaluations, and thank you