Presentation given to the University of Western Ontario Faculty of Information and Media Studies on February 3rd, 2009.

1. Consumer Health
Robin Featherstone
Research & Instructional
Librarian (Health Sciences)
Allyn & Betty Taylor Library
rfeathe@uwo.ca

2. Agenda
• Terminology
• Medical vs. Plain Language
• Scenarios and Reference Tips
• Resources
• Collections
• Questions

3. Terminology
1. Consumer Health Information
Information designed to help individuals understand their
health and make health-related decisions for themselves and
their families1
1 HealthPeople 2010 project:
http://www.healthypeople.gov/document/HTML/Volume1/11HealthCom.htm

4. Terminology
2. Health Literacy
The degree to which people have the capacity to obtain,
process and understand basic health information and
services needed to make appropriate health decisions.2
2 HealthPeople 2010 project:
http://www.healthypeople.gov/document/HTML/Volume1/11HealthCom.htm

5. A Multidimensional Model of Health
Literacy
• Four domains
1. Fundamental literacy (reading, writing, speaking, and
numeracy)
2. Scientific literacy (being able to understand and use
science and technology)
3. Civic literacy (being aware of public issues, being
involved in the decision-making process)
4. Cultural literacy (being able to recognize, understand,
and use the collective beliefs, customs, worldview,
and social identity of diverse individuals to interpret
and act on information)
Zarcadoolas, C., Pleasant, A. F., & Greer, D. S. (2006). Advancing health literacy: A
framework for understanding and action. San Francisco, CA: Jossey-Bass.

6. Easy to understand?

7. Easy to understand?

8. Easy to understand?

9. Easy to understand?

10. Easy to understand?

11. Low Health Literacy Results In...
• Improper use of medications
• Inappropriate use or no use of health services
• Poor self-management of chronic conditions
• Inadequate response in emergency situations
• Lack of self-efficacy and self-esteem
• Financial drain on individuals and society
• Social inequity
Zarcadoolas, C., Pleasant, A. F., & Greer, D. S. (2006). Advancing health literacy: A
framework for understanding and action. San Francisco, CA: Jossey-Bass.

12. Barriers to Health Literacy
• Complexity of written health information
• Lack of non-English health information
• Lack of culturally appropriate health information
• Inaccuracy or incompleteness in mass media
• Low-level reading abilities, especially among
under-educated, elderly, and some segments of
ethnic minority populations
• Lack of empowering content that targets
behaviour change as well as direct information
Zarcadoolas, C., Pleasant, A. F., & Greer, D. S. (2006). Advancing health literacy: A
framework for understanding and action. San Francisco, CA: Jossey-Bass.

13. Terminology
3. Health Information Literacy
The set of abilities needed to:
• Recognize health information need
• Identify likely information sources and use them to
retrieve relevant information and its applicability to a
specific situation
• Analyze, understand, and use the patient information
to make good health decisions3
3 MedicalLibrary Association:
http://www.mlanet.org/resources/healthlit/define.html

14. Terminology
4. Patient Education
A planned activity, initiated by a health professional, whose
aim is to impart knowledge, attitudes and skills with the
specific goal of changing behaviour, increasing compliance
with therapy, and thereby, improving health4.
4Medical Library Association, Consumer and Patient Health Information Section :
http://caphis.mlanet.org/chis/librarian.html

15. Terminology
5. Plain Language
Language that is simple, clear, direct and uses common
words. The intent of plain language is to make information
accessible, especially to those who have low literacy skills, or
low proficiency in a second language5.
5Health Canada:
http://www.hc-sc.gc.ca/hcs-sss/pubs/acces/2001-lang-acces/gloss-eng.php

16. Medical Language
Huntington disease is an inherited progressive
neurodegenerative disorder characterized by
choreiform movements, psychiatric problems, and
dementia. 6
6UpToDate: Huntington disease – Clinical features and diagnosis:
http://www.uptodateonline.com/online/content/topic.do?topicKey=move_dis/8919&sel
ectedTitle=1~36&source=search_result

17. Plain Language
Huntington disease is a progressive brain disorder
that causes uncontrolled movements, emotional
problems, and loss of thinking ability (cognition).7
7Genetics Home Reference - Huntington Disease:
http://ghr.nlm.nih.gov/condition=huntingtondisease

18. Medical Language
Huntington disease is caused by a trinucleotide
(CAG) expansion in the HD gene (also known as the
HTT gene) that encodes the protein huntingtin,
resulting in an expanded polyglutamine tract.
Huntingtin is present in a large number of tissues
throughout the body. However, pathology appears to
be limited to the central nervous system, with
atrophy of the caudate and putamen (the
neostriatum) being most prominent. 8
8UpToDate: Huntington disease – Etiology/Genetics:
http://www.uptodateonline.com/online/content/topic.do?topicKey=move_dis/8919&sel
ectedTitle=1~36&source=search_result

19. Plain Language
Mutations in the HTT gene cause Huntington disease.
The HTT gene provides instructions for making a
protein called huntingtin. Although the function of
this protein is unknown, it appears to play an
important role in nerve cells (neurons) in the brain.9
9Genetics Home Reference - Huntington Disease:
http://ghr.nlm.nih.gov/condition=huntingtondisease

20. Questions about Consumer
Health Terminology?

21. Scenarios
• As a librarian, where will you encounter
consumers needing health information?
– Public Libraries
– Academic Libraries
– Hospital Libraries
– Consumer Health Libraries (Resource Centres)
– Parties, on the bus, on the phone with your
mother, etc...

22. Scenario #1
You work in an academic library and notice someone
who doesn’t seem to belong. He sits and reads the same
book everyday and has been doing so for a couple of
weeks. He avoids eye contact and has never asked for
help. One day, while you’re shelving, you find the book at
his empty seat. It is a book about Huntington Disease,
written for clinicians and published in 1978.
In small groups, discuss this scenario.
What are some issues to consider?
How would you behave in this situation?

23. Questions
• Why doesn’t this “guarded patron” take the
book out of the library?
• What is his interest in this book?
• Is there a better source of information?
• Should you suggest another source?
• Why? Why not?

24. Scenario #2
A familiar woman approaches you while you are
working on the reference desk at a public library. She
tells you that her mercury fillings have been
poisoning her and then hands you a article she found
on the web. She says that she is trying to decide
whether to remove her fillings and wants some more
information to help her make up her mind. She
finishes by mentioning that the “other librarian” was
no help at all.
In small groups, discuss this scenario.
What are some issues to consider?
How would you behave in this situation?

25. Questions
• What did your searches reveal about mercury
fillings?
• What kind of evidence should you use to
answer this question?
• What if this “frequent flyer” doesn’t like the
information you find? What if she comes
back?

26. What are some good sources?
1. Canadian Dental Association, “Dental Amalgam
FAQs”:
http:www.cda-adc.ca/en/oral_health/faqs_resources/faqs/dental_amalgam_faqs.asp
2. U.S. Food and Drug Administration, CDRH Consumer
Information, “Questions and Answers on Dental
Amalgam”:
http://www.fda.gov/cdrh/consumer/amalgams.html

27. General Tips for Reference Interviews
• Put together web-based and print directories of a
FEW consumer health resources
• Practice compassionate reference: Listen,
observe, empathize
• Keep information confidential
• Keep personal opinions to yourself
• Anticipate common concerns or worries (i.e.,
financial repercussions, physician reprimand)
• Teach basics of sound internet searching
• Promote

28. The “Best” Sources of Consumer
Health Information
• Are written for a consumer audience (grade 6
to 8 reading level)
• Are written by medical authorities
• Include references to evidence-based sources
• Have a review board
• Are updated regularly
• Don’t include advertisements

29. Questions to ask when picking a
resource
• Is the information age-appropriate?
• Is the information culturally appropriate?
• Is the information understandable to the
patron?
• Does the information answer the patrons
questions?
• Is the information accessible? i.e., Can you
increase the font size?

30. Resources for Kids
(i.e., not just about them)
• AboutKidsHealth:
http://www.aboutkidshealth.ca/
• ToxMystery (also in Spanish):
http://toxmystery.nlm.nih.gov/
• Bam! Body and Mind:
http://www.bam.gov/
• U.S. Department of Health & Human
Services Directory of Kids’ Sites:
http://www.dhhs.gov/kids/

31. Resources for Seniors
• Public Health Agency of Canada, Seniors
Health Pages (also in French):
http://www.phac-aspc.gc.ca/sh-sa-
eng.php?rd=senior_agee_eng
• NIHSeniorHealth:
http://nihseniorhealth.gov/

32. Resources for Minority Groups
• Public Health Agency of Canada, Aboriginal
Peoples Health Pages: http://www.phac-
aspc.gc.ca/chn-rcs/aboriginal-autochtones-
eng.php
• Asian American Health (Includes materials in
Chinese, Filipino and Japanese):
http://asianamericanhealth.nlm.nih.gov/

33. General Consumer Health Resources
• MedlinePlus: http://medlineplus.gov/
• HealthyOntario:
http://www.healthyontario.com/
• Health Canada (also available in French):
http:www.hc-sc.gc.ca
• Public Health Agency of Canada (also available
in French): http://www.publichealth.gc.ca
• ClinicalTrials.gov: http://clinicaltrials.gov/

34. Subscription Clinical Databases with
Patient Handouts
• ACP PIER
• MD Consult
• Micromedex
• UpToDate

35. Questions about Consumer
Health Resources?

36. Collections
• How do I begin collecting consumer health
materials?

37. Collections Considerations
• “Consumer health” not used as LC subject
heading.
(hint: try your medical term followed by “popular works”)
i.e., Dentistry– Popular works.
• Order books for a “general audience”
• Base collections decisions on patron requests and
local demographic information – Ask for patron
feedback
• Hand-pick – check currency, authority, references,
publisher, etc...
• Consider audio/visual materials as well as print

38. Recommended Reading
Spatz, M. (2008). Answering consumer health questions: The
Medical Library Association Guide for Reference Librarians.
New York, NY: Neal-Schuman.
Zarcadoolas, C., Pleasant, A. F., & Greer, D. S. (2006). Advancing
health literacy: A framework for understanding and action.
San Francisco, CA: Jossey-Bass.

39. Questions