What Your Patients Are Reading: Help Them Surf the Internet Without Drowning

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What Your Patients Are Reading Help Them Surf
the Internet Without Drowning

• Marie A. Abate, BS, PharmD.
• Professor of Clinical Pharmacy
• Director, WV Center for Drug and Health
  Information

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Surf the Internet Without Drowning

• At the completion of this session, participants
  will
• Discuss the problems associated with medical or
  health-related information on the Internet.
• Describe useful, high quality patient oriented
  medical or health-related information resources
  available on the Internet.
• Identify resources that can be used by patients
  to help them learn to differentiate good vs. poor
  sources of medical or health-related information
  on the Internet.

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Patient Use of Internet

• Why do patients use the Internet to find medical
  information?

• To learn as much as possible own knowledge
• Health care providers do not provide patients
  with thorough information
• Internet - convenient, relatively easy

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Patient Use of Internet

• How many individuals use Internet in U.S.?

• Over 220 million users, 72 of population (2008)
• 80 of Internet users searched for information
  on health topic (2006)

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Problems with Internet Information

• Are there problems with medical information on
  the Internet?

• Widespread inaccurate/ inappropriate
  information
• Misleading product claims
• Information can be misinterpreted by
  patients
• Lack of peer review process

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Problems with Internet Information

• Examples of Problems Uncovered

• Study evaluating quality of web sites providing
  pt. info about emergency contraception -- 32
  relevant sites, none met all criteria for
  credibility and content, none provided complete
  info.
• Latthe M, et al. Quality of information on
  emergency contraception on the Internet. Br J
  Fam Plann. 2000 Jan26(1)39-43

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Problems with Internet Information

• Examples of Problems Uncovered

• Of 60 web sites providing information about
  childhood diarrhea treatment, 12 (20) from
  medical sites conformed to American Academy of
  Pediatrics guidelines
• Included 4 of 20 (20) teaching centers, 1 of 5
  (20) health depts
• McClung HJ, et al. The Internet as a source for
  current patient information. Pediatrics. 1998
  Jun101(6)E2.

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Problems with Internet Information

• Examples of Problems Uncovered

• Web information about home management of cough in
  children -- of 19 sites identified, quality
  scores ranged from -5 to 5 (maximum 6)
• 10 of 19 had negative scores - more incorrect
  than correct information
• Adherence to guidelines (AAP, WHO)
• Pandolfini C, et al. Parents on the web risks
  for quality management of cough in children.
  Pediatrics. 2000 Jan105(1)e1.

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Problems with Internet Information

• Examples of Problems Uncovered

• Study of quality of web information about
  depression, asthma, obesity
• Depression (44 provided more than minimum,
  completely correct) asthma and obesity (36 and
  37, respectively) provided more than minimum,
  completely correct
• Berland GK, et al. Health information on the
  Internet accessibility, quality, and readability
  in English and Spanish. JAMA. 2001 May
  23-30285(20)2612-21.

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Problems with Internet Information

• Examples of Problems Uncovered
• Quality/accuracy information about aromatase
  inhibitors (anastrozole, etc) for adjuvant
  treatment of early estrogen receptor breast
  cancer
• 180 web sites evaluated - mean score 6.1 out of
  12 51 (28) had score gt 9 only 2 (1) accurate
  information concerning benefits over tamoxifen
  (National Institute for Health Clinical
  Excellence Guidelines, UK)
• Beaton C, et al. Evaluation of the quality
  and accuracy of information regarding aromatase
  inhibitors available on the internet. Breast J.
  2008 Jul-Aug14(4)366-8.

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Problems with Internet Information

• Examples of Problems Uncovered
• Examined vaccine criticism/discouraging vaccine
  use on the Internet
• Web search (8 search engines)
• 78 vaccine-critical sites
• 91 - linked vaccinations with illnesses such as
  multiple sclerosis, autism, and diabetes

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Problems with Internet Information

• Examples of Problems Uncovered
• 74-79 - vaccines provide only temporary
  protection, diseases prevented are mild diseases
  prevented have declined
• 58-62 - physicians underreport adverse effects
  physicians misinformed about
• Public may accept these claims and refuse
  vaccination of their children
• Zimmerman RK, et al. Vaccine criticism on the
  World Wide Web. J Med Internet Res. 2005 Jun
  297(2)e17

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Examples of Internet Information Patients Are
Reading

• Colloidal silver
• Zapper

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The transformation began in 1994 when Karason.
noticed an ad championing the curative powers of
colloidal silver. Though long promoted by
advocates colloidal silver is banned by the FDA
in products making claims to any health
benefits.. Still, says Karason, who has always
been intensely skeptical of traditional medicine,
"that ad got stuck in my head like a song and I
couldn't get rid of it." For 60, he purchased a
generator that allows him to make colloidal
silver from distilled water and silver wire. For
the next four years, he says, he drank a tumbler
of the bitter, milky liquid every night,
marveling at what he felt were its restorative
effects.
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At first, Karason says, he noticed no negative
side effects, let alone a change in skin color.
In 1998 he quit his job to move in with his
parentsOverwhelmed by his role as a caregiver
and distracted by his own disintegrating
marriage, Karason developed a painful case of
dermatitis. That's when he began to apply
colloidal silver directly to the cracked and
peeling skin on his face. over several months,
it turned Karason's face a dark shade of blue (a
condition known as argyria, when the silver
accumulates in tissue under the skin). "I was so
stressed out taking care of my parents, I just
didn't notice the change," he explains.
(People, Jan 28, 2008)
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Regulation of Medical Claims - FTC, FDA

• Federal Trade Commission (FTC)
• Independent agency, reports to Congress
• Bureau of Consumer Protection protect consumers
  against unfair, deceptive or fraudulent practices
• Division of Advertising Practices - nations
  enforcer of federal truth-in-advertising laws
  law enforcement activities

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Regulation of Medical Claims - FTC, FDA

• Division of Advertising Practices - focuses on
• o Claims for foods, drugs, dietary supplements,
  and other products promising health benefits
• o Health fraud on the Internet
• o Weight-loss advertising
• o Advertising and marketing directed to children.
• o Claims about product performance made in
  national or regional newspapers and magazines in
  radio and TV commercials, including infomercials
  through direct mail to consumers or on the
  Internet

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Regulation of Medical Claims - FTC, FDA

• Food and Drug Administration
• Responsible for protecting public health
• Assure safety, efficacy, and security of human
  and veterinary drugs, biological products,
  medical devices, food supply, cosmetics, and
  products that emit radiation
• Helps to speed innovations that make medicines
  and foods more effective, safer, and more
  affordable
• Help public get accurate, science-based
  information to use medicines and foods to improve
  their health.

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Regulation of Medical Claims - FTC, FDA

• Food and Drug Administration
• Dietary Supplement Health and Education Act
  (DSHEA) of 1994 - allows manufacturers of dietary
  supplements to claim effects on the "structure or
  function" of the body, but not to make claims to
  mitigate, treat, prevent, cure, or diagnose
  disease (21 U.S.C. 343r(6)) disease claims
  require evidence of safety and efficacy to be
  presented to the agency before marketing

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Regulation of Medical Claims - FTC, FDA
Swiss Company Charged by FTC with Making
Unsubstantiated Health Claims - 1/27/2003 FTC
charged a Switzerland-based company and its U.S.
counterpart with making numerous unsubstantiated
efficacy claims for a variety of dietary
supplements and devices that they sell on the
Internet.
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Regulation of Medical Claims - FTC, FDA
Products at issue are - the "Zapper," (sold as
the "Super-Zapper Deluxe") a device that
purportedly kills disease causing parasites in
the body with electricity - "Dr. Clark's New 21
Day Program for Advanced Cancers," a regimen that
includes dietary supplements. It purportedly
cures advanced cases of cancer, and, when used
with the "Super-Zapper Deluxe," renders surgery
and chemotherapy unnecesssary
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Regulation of Medical Claims - FTC, FDA
Swiss Company to Provide Refund to U.S.
Consumers Defendants Sold Worthless Products and
Dietary Supplements to Cure Serious Diseases -
12/3/2004 To settle the FTCs charges, proposed
final order prohibits defendants from making
unsubstantiated health or safety claims for any
food, drug, dietary supplement, or devicealso
requires defendants to notify U.S. consumers that
they are entitled to full refunds. Settlement
contains various recordkeeping provisions to
assist FTC in monitoring the defendants
compliance.
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Regulation of Medical Claims - FTC, FDA
When FTC or FDA takes action, do the
inappropriate ads disappear from the Internet?
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Summary

• Many misleading product claims and incomplete or
  inappropriate information on Internet
• Can not rely on federal regulators to eliminate
  this information
• Only 25 of Internet health information seekers
  most or always check the source and date of
  information
• Health professionals must do better job of
  helping patients who use the Internet find high
  quality information

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Reputable Web Sites

• Healthfinder - (healthfinder.gov)
• Information gateway, NIH
• Excellent resource for patients, health
  professionals
• Information selected using specific guidelines
  govt agencies, professional organizations (e.g.,
  AHA, ADA, etc.), universities, etc.
• Search - limited to selected agencies

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Reputable Web Sites

• MedlinePlus - medlineplus.gov
• Developed by NLM (Natl Lib of Medicine)
• Excellent resource patients, health
  professionals
• News items
• Health topics (diseases, conditions, etc.) -
  provides links to a variety of selected, quality
  web sources about a topic
• Drugs (ASHP pt info), supplements
• Dictionaries/Medical encyclopedia

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Breast cancer
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Reputable Web Sites

• National Cancer Institute (NIH) - (cancer.gov)
• Up-to-date, accurate information
• Link to cancer subset of MEDLINE
• Types of cancer treatments prevention,
  genetics, causes screening testing coping
  with cancer, support resources, stats

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Reputable Web Sites

• PDQ comprehensive cancer database
• Cancer Information Summaries
• Treatment - Adult Pediatric
• Prevention, Genetics, Causes
• Screening and Detection
• Clinical Trials Cancer Literature
• Research Related Information
• Statistics
• Heath professional patient versions available
• Complementary/alternative medicines

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Reputable Web Sites

• Womenshealth.gov www.womenshealth.gov/
• National Women's Health Information Center (US
  Department of Health and Human Services)
• Womens health information on more than 800
  topics (through call center and web site)
• Contains
• Health topics, news, publications, health tools,
  data statistics

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Reputable Web Sites

• NIH Senior Health http//nihseniorhealth.gov/
• (National Institute on Aging, National Library of
  Medicine)
• Aging-related health information (38)
• Each health topic includes
• General background information
• Open-captioned videos
• Quizzes
• Frequently asked questions (FAQs)

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Reputable Web Sites

• Natural Medicines Comprehensive Database
  (www.naturaldatabase.com)
• Subscription required professional (92/yr)
  consumer version (49/yr)
• Book, web, PDA access
• Prof version - includes patient handouts
• Excellent resource
• Indicates USP Verified products

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migraine
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Reputable Web Sites

• AIDSinfo (www.aidsinfo.nih.gov)
• Guidelines (up-to-date for prevention,
  treatment), Health topics
• Drugs
• - AIDSinfo Drug Database fact sheets about
  each AIDS/HIV drug
• - Approved medications for HIV infection
• Vaccines

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Reputable Web Sites

• Patient Drug Information Leaflets
• MedlinePlus.gov (ASHP)
• Drugs.com (leaflets from several sources
  includes some herbal products
• Mayo Clinic (www.mayoclinic.com) (Micromedex)
• Others evaluate before using

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Reputable Web Sites

• Several Professional Organizations
• American Academy of Pediatrics
• American Diabetes Association
• American Society of Colon and Rectal Surgeons
• American Academy of Neurology
• Many others -- check Medlineplus.gov or
  healthfinder.gov

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Helping Patients Evaluate Sites

• How to Evaluate Health Information on the
  Internet Questions and Answers
• http//www.cancer.gov/cancertopics/factsheet/Infor
  mation/internet
• - Cancer.gov

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Helping Patients Evaluate Sites

• Miracle Health Claims Add a Dose of Skepticism
  - Federal Trade Commission
• http//www.ftc.gov/bcp/edu/pubs/consumer/health/he
  a07.shtm
• Common health fraud targets
• How to spot false claims
• How to report potential problems

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Helping Patients Evaluate Sites

• Dietary Supplements January 2002. Tips for the
  Savvy Supplement User Making Informed Decisions
  and Evaluating Information - FDA
• http//www.cfsan.fda.gov/dms/ds-savvy. html
• Points about dietary supplements
• How to search for supplements
• Links to other web sites discussing how to
  evaluate Internet quality

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Helping Patients Evaluate Sites

• Evaluating Health Information A Tutorial from
  the National Library of Medicine
• http//www.nlm.nih.gov/medlineplus/webeval/webeval
  .html
• Narrated tutorial points to consider when
  evaluating information

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Helping Patients Evaluate Sites

• Evaluating Health Information, MedlinePlus
• http//www.nlm.nih.gov/medlineplus/
  evaluatinghealthinformation.html
• Links to many resources in this area for
  consumers, formatted in MedlinePlus style

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We can do a better job at helping patients find
the information they need!