Consumer Health

Robin Featherstone

Research & Instructional Librarian (Health Sciences)

Allyn & Betty Taylor Library

rfeathe@uwo.ca

Agenda

• Terminology

• Medical vs. Plain Language

• Scenarios and Reference Tips

• Resources

• Collections

• Questions

Terminology

1. Consumer Health Information

Information designed to help individuals understand their health and make health-related decisions for themselves and their families1

1 Health People 2010 project: http://www.healthypeople.gov/document/HTML/Volume1/11HealthCom.htm

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 Health People 2010 project: http://www.healthypeople.gov/document/HTML/Volume1/11HealthCom.htm

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: Aframework for understanding and action. San Francisco, CA: Jossey-Bass.

Easy to understand?

Easy to understand?

Easy to understand?

Easy to understand?

Easy to understand?

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: Aframework for understanding and action. San Francisco, CA: Jossey-Bass.

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: Aframework for understanding and action. San Francisco, CA: Jossey-Bass.

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 Medical Library Association: http://www.mlanet.org/resources/healthlit/define.html

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

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

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&selectedTitle=1~36&source=search_result

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

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&selectedTitle=1~36&source=search_result

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

Questions about Consumer Health Terminology?

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...

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?

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?

Scenario #2A 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?

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?

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

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

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

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?

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/

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/

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/

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/

Subscription Clinical Databases with Patient Handouts

• ACP PIER

• MD Consult

• Micromedex

• UpToDate

Questions about Consumer Health Resources?

Collections

• How do I begin collecting consumer health materials?

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

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.

Questions