Consumer Health Online 2004

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Consumer Health Online2004

• Instructor
• Bette Anton
• banton_at_library.berkeley.edu
• An Infopeople Workshop
• February-April 2004

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This Workshop Is Brought to You By the Infopeople
Project

• Infopeople is a federally-funded grant project
  supported by the California State Library. It
  provides a wide variety of training to California
  libraries. Infopeople workshops are offered
  around the state and are open registration on a
  first-come, first-served basis.
• For a complete list of workshops, and for other
  information about the Project, go to the
  Infopeople Web site at infopeople.org.

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Introductions

• Name
• Library
• Position
• How much health-related reference do you do?
• How much time do you generally spend answering
  reference questions?
• Are there health-related questions that you are
  frequently asked?
• Other?

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Workshop Overview

• Background
• Finding information on specific health topics
• General information sites
• Government sites
• Evaluation Techniques
• Therapies
• Special populations/topics

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Health Seekers

• Half of American adults have searched online for
  health information.
• Fully 80 of adult Internet users, or about 93
  million Americans, have searched for at least one
  of 16 major health topics online. This makes the
  act of looking for health or medical information
  one of the most popular activities online, after
  email (93) and researching a product or service
  before buying it (83).
• Source Fox S, Fallows D. Internet Health
  Resources. Washington, DC Pew Internet
  American Life Project 2003.

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• About 6 million Americans go online for medical
  advice on a typical day. That means more people
  go online for medical advice on any given day
  than actually visit health professionals,
  according to figures provided by the American
  Medical Association.
• Source Fox S, Rainie L. Vital decisions how
  Internet users decide what information to trust
  when they or their loved ones are sick. Pew
  Internet American Life Project 2002

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Pew Internet American Life Project Reports
People Want

• 93 - a particular illness or condition.
• 65 - nutrition, exercise or weight control
• 64 - prescription drugs
• 55 - before visiting a doctor
• 48 - alternative or experimental treatments or
  medicines
• 39 - mental health issue such as depression or
  anxiety
• 33 - sensitive health topic that is difficult
  to talk about
• 32 - particular doctor or hospital (report
  cards)

Source Fox S, Rainie L. Vital decisions how
Internet users decide what information to trust
when they or their loved ones are sick. Pew
Internet American Life Project 2002
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How Californians Compare to the Rest of the Nation

• Pew Internet American Life Project 2003 says
• Californians living in low income households
  lt30,000/yr are significantly more likely to go
  online than their counterparts in the rest of the
  country.
• 83 of California Internet users have used the
  Internet to search for health information
• specific disease
• medical procedure
• nutrition
• other

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Health Topics More Popularin California

• Alternative treatments or medicines
• Health insurance
• Experimental treatments or medicines
• Problems with drugs or alcohol
• 7 out of 10 Californians (all income groups) say
  the Internet has improved the health medical
  information services they receive

Source Fox S. Wired for Health How
Californians compare to the rest of the nation.
Pew Internet American Life Project
2003. http//www.pewinternet.org/reports/toc.asp?R
eport105
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Evidence-Based Health Care

• Evidence-based medicine is the conscientious,
  explicit and judicious use of current best
  evidence in making decisions about the care of
  individual patients.
• Source Sackett DL, et al. Evidence based
  medicine what it is and what it isnt. BMJ
  1996 312(7023)71-72.

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•  
• How is Lyme Disease
• diagnosed and treated?
•  
•  

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Specific Disease/Conditions

• Some searching tips
• Become familiar with the general health
  information finding tools that you believe to be
  reliable
• When you have found sites that look relevant, use
  evaluation criteria to help decide whether
  information is credible, timely and useful.
• Always get a second opinion
• Even the best evidence may not pertain to a
  particular individual.

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Information on Specific Disease or Condition

• Background
• Definitions
• Overview
• What kinds of information?
• Etiology (cause or origin)
• Diagnosis
• Treatment
• Prognosis (course outcome)

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Bookmarks

• Go to bookmarks.infopeople.org
• Look for the class bookmark file
  consumer_health_bk.html
• Click on it so it shows on the screen
• With the class bookmark file showing in Internet
  Explorer, click the Favorites menu, choose Add to
  Favorites
• Notice the name in the Name box so that you can
  use the Favorites list to get back to the class
  bookmarks for the rest of the day.

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Government Information

• California Department of Health Services
• Gateway with link to city/county health
  organizations
• Phone numbers for local health departments
• Healthfinder.gov
• Gateway to the best government and non-profit
  health agency information
• Provides basic information links to more
  detailed information

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• Authoritative up-to-date information
• From NLM NIH
• Encyclopedia dictionary
• Drug information
• Clinical trial information
• Updated daily
• No advertising

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• PubMed
• Over 14 million citations, 1950s -
• Links to many sites providing full text articles
  and other related resources
• http//pubmed.gov
• Loansome Doc
• Is a method of ordering PubMed articles
• The borrower must make an agreement with a local
  health science library

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PubMed Central

• NLM's digital archive of life sciences journal
  articles
• Open access archive
• Can search the full text of articles in PMC
• Searching is similar to searching in PubMed
• Directory of open access journals
  http//www.doaj.org

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What Do We KnowAbout Searching Behavior?

• Consumers use search engines rather than medical
  portals or sites of medical societies or
  libraries.
• When assessing the credibility, they primarily
  looked for the source, professional design,
  scientific or official touch, language, and ease
  of use.
• Under observation, none checked about us
  sections, disclaimers, or disclosure statements.

Source Eysenbach, G, Köhler, C. How do
consumers search for and appraise health
information on the world wide web? BMJ. 2002
March 9 324 (7337) 573577.
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Good, Bad or Ugly?

• http//focusas.com

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Evaluate, Evaluate, Evaluate!!

• Source
• Currency
• Accuracy of content
• Purpose
• Links
• Design
• Verify information - get a second opinion

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Evaluate, Evaluate, Evaluate!!

• Contributes to, is linked to, associated
  with is not the same as causes
• Doubles the risk is meaningful depending upon
  what risk was in the first place
• Significant is not the same as statistically
  significant

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Are there Drug Site-Specific Evaluation Issues?

• May v. will
• Proves - one study alone infrequently proves
  something
• Breakthroughs rarely happen
• Significant v. statistically significant
• Beware of miraculous cures
• Use the same criteria as for evaluation of
  other health web sites

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Direct-to-Consumer Advertising

• Education or emotion promotion?
• Misleading?
• Success rate of drug
• Duration of use
• Alternative treatments
• Patient misconceptions
• Only best/safest can be advertised
• FDA reviews ads

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• Is there any evidence
• that glucosamine sulfate
• can help arthritis?

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Complementary Alternative Medicine (CAM)

• Diverse medical health care systems,
  practices, and products not presently considered
  to be part of conventional medicine. Source
  http//nccam.nih.gov/health/whatiscam/
• Less evidence of efficacy of treatments and
  safety.
• 36 of adults over age 18 use some form of
  alternative medicine Source CDC 2002 Natl
  Health Interview Survey

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Integrative Medicine

• Combines mainstream medical therapies and CAM
  therapies for which there is some high-quality
  scientific evidence of safety and effectiveness.

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Special Populations

• Ethnic groups
• According to the latest U.S. census data, 41 of
  Californians over the age of 5 speak a language
  other than English at home.
• Age
• Gender
• Even pets!

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Health Literacy

• Health literacy is the ability
  to read, understand, and act
  on health care information.
• Source Center for Healthcare Strategies,
  Inc.http//www.chcs.org/resource/pdf/hl1.pdf

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Who Has Health Literacy Problems?

• People of all backgrounds, especially those with
  chronic health problems
• Older people, immigrants those with low incomes
  are disproportionately more likely to have
  trouble reading understanding health-related
  information.

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Internet Filtering

• See No Evil How Internet Filters Affect the
  Search for Online Health Information
• Report finds
• Pornography can effectively be blocked without
  blocking most health information
• This is true only if not used at most restrictive
  settings
• Further information at
• http//www.kff.org/entmedia/20021210a-index.cfm

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Finding Hospitals Doctors

• Report Cards
• Who created the Report Card?
• What questions were asked?
• Who gave the answers? How many people were
  surveyed?
• Is the information reported of interest to me?
• Is terminology defined?
• How old is the information?

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Support Groups

• Look for groups in disease-specific, general
  health directory sites
• E-mail support
• Listserv
• Chat groups
• Pros and cons?

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In Summary

• Quality of medical information
  available on the Internet is uneven
• Many people still lack access
• Health seekers frequently have difficulty
  finding, understanding and using this information
• NEVER provide medical advice.
• Send patrons to their health care providers for
  interpretation of health information.