INLS890-096
Consumer Health Information
Syllabus
Instructor:
Professor Joanne Gard Marshall, AHIP
marshall@ils.unc.edu
919/ 843-7883 or 919/ 843-9968
Class location and times: Manning 214 Thursdays, 2:00 – 4:30 p.m.
Course description: This course will examine the growing need for access to health information
for the public in the context of federal and state policy initiatives such as Healthy People 2010
http://www.healthypeople.gov/ . The World Health Organization defines health as a complete
state of physical, mental and social well-being and not simply the absence of disease
http://www.who.int/about/definition/en/. The course will examine concepts of health and illness
from various cultural and social perspectives as a basis for designing print and digital health
information collections and services for diverse user groups. Through the major assignment,
students will have an opportunity to focus on a particular health topic of interest. The course will
challenge students to think creatively about how to improve health status at the individual,
community and global levels though the provision of information services.
Expectations: The course will be run as a discussion seminar in which the instructor and
students will share ideas based on their knowledge and experience in the consumer health
information area and what they have learned from course readings and other resources during the
semester. The success of the class will depend on regular attendance and participation by
everyone in the class, so students are asked to contact the instructor in advance if they are unable
to attend. Students are encouraged to share new sources of CHI and new items relevant to CHI
topics or services during the semester.
Honor code: All SILS students must follow the University Honor Code. In brief, the Honor
Code requires students to refrain from giving or receiving unauthorized aid: cheating and
plagiarism are strictly prohibited and punished. All students should read the guide to the Honor
Code in the SILS catalog (from the SILS website at
http://sils.unc.edu/programs/bsis/policies.html)
Objectives
By the time this course ends, you should be able to do the following:
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Demonstrate an understanding of human health as a resource for everyday living and the
complex individual, organizational, social and global factors underlying health
information needs and uses.
Demonstrate an understanding of information issues of concern to patients and
consumers of health care and health information, including health literacy and barriers to
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health information access.
Discuss, generally, the historical, legal, and social trends leading to today's health care
environment. This includes historical trends, informed consent, malpractice, evidencebased practice, the role of the pharmaceutical industry and other commercial health care
providers as well as other issues.
Demonstrate knowledge of major types of resources that people use when they are
seeking health information. These include health professionals, friends and advocates,
self help groups as well as print and online resources.
Conduct a health information reference interview and design a search strategy to meet the
information need.
Be knowledgeable about the appropriate use of various health information sources in
different situations. These resources include personal resources, including general portal
sites, disease or issue specific resources, complementary and alternative resources,
proprietary databases that index popular health journal articles, and other, non-lay level
non-lay level resources (e.g., CINAHL and PubMed).
Demonstrate the ability to evaluate resources for validity, reliability, and literacy level.
Be conversant about consumer health information and patient education research.
Demonstrate awareness of regional and national public health initiatives, especially
Healthy Carolinians and Healthy People 2010.
Contribute to an ongoing dialog about research and other developments related to
consumer health information throughout the course, including sharing information about
useful resources that you find.
Course text and resources:
While students are not required to buy a text, there is a three volume set in the SILS library
with which students should become familiar and use as a resource for assignment
preparation:
Medical Library Association. (2004). Encyclopedic Guide to Searching and Finding
Health Information on the Web. Anderson, P.F. & Allee, N.J. (Eds.). New York: NeilSchuman Publishers. 3 volumes.
Students should also become familiar with the resources at the UNC Health Sciences Library
including http://www.nchealthinfo.org/. During the class we will also discuss health
information available from health care providers, bookstores, newspapers and in public
libraries, so make a point of exploring these resources in your own community.
Course Grading and Assignments:
1. Evaluate three health information resources (one website, one pamphlet and one
magazine or newspaper article) on the basis of content, accuracy and intended audience.
Select your website from the MLA Encyclopedic Guide to Searching and Finding Health
Information on the Web listed above. Bring the resources to class if possible. A computer
will be available to access the website. Come to class prepared to discuss the strengths and
limitations your sources and prepare a one page handout that includes bibliographic
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information and a brief summary for all three sources that can be shared with the class. Due
Feb 14. 15% of course grade.
2. Conduct a health reference interview with someone who needs health information and
design a search strategy. Come to class prepared to discuss your experience and search
strategy and report on your results in a two page handout with the class. In advance of the
class, you should also give a copy of the search results to the person needing the information
and discuss their response in the class. Due March 27. 20% of course grade.
3. Select a broad health topic such as heart disease, obesity or exercise that related to the
priorities identified in Health Carolinians. Design a pathfinder or resource guide on the
topic that includes key portals, specific websites, books, magazine articles, self help groups
and any other CHI resources that would be of interest to health information seekers. The
guide should designed as a two page handout that can be distributed to other members of the
class. Come prepared to discuss the process you used to prepare your guide and the results.
Come to class prepared to discuss your guide. Discuss your topic choice with the instructor
by March 20. Due April 10. 30% of course grade.
4. Select a book to read during the semester from the bibliography provided by the instructor
or another approved work. Inform the instructor of your choice by Feb 14. The final class
session will provide an opportunity to share your thoughts about the book and how it relates
to conceptions of health and disease and health information needs. Provide a one page
handout with complete citation and your comments on the book to share with other students
during the discussion on April 24. 15% of course grade.
5. Overall participation 20%.
Definitions:
Consumer health information (CHI) is information on health and medical topics intended for
use by the general public, including patients and their families. In addition to information on the
symptoms, diagnosis, and treatment of disease, CHI encompasses information on health
promotion, preventive medicine, the determinants of health, and accessing the health care
system.
Patient education is a planned activity or resource provided by a health professional whose aim
is to impart knowledge, attitudes, and skills, with the specific goal of changing behavior and
increasing compliance with prescribed therapy.
CHI and patient education overlap in practice, since patient behavior may change as a result of
receiving health information regardless of whether that information is provided as part of a
treatment plan by health professionals. Patient education and CHI tend to differ in terms of the
setting in which the process occurs, rather than in terms of the subject matter.
(Medical Library Association, 1996).
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Jan 17
INTRODUCTION & DISCUSSION
In our first class, we will do introductions, review course requirements and discuss some of the
topics we'll be covering this semester as well as the advance readings.
Advance readings from the Pew Internet and American Life Project
Information searches that solve problems. How people use the internet, libraries, and
government agencies when they need help. December 30, 2007.
http://www.pewinternet.org/PPF/r/231/report_display.asp
Online health search 2006. Most internet uses start with a search engine when looking for health
information online. Very few check the source and date of the information they find. October 26,
2006
http://www.pewinternet.org/PPF/r/190/report_display.asp
Questions for discussion.
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What is health?
What is patient education?
What is consumer health information (CHI)?
What is the role of CHI in health and health care?
What factors affect access to quality health information?
How do we make decisions about health?
How can we evaluate consumer health information?
Requirements for the course.
Jan 24
SO WHAT’S OUT THERE? LOOKING AT SOURCES OF HEALTH
INFORMATION
We will discuss the myriad of sources and formats of health information using the following
examples:
Government agencies
http://www.healthfinder.gov/
Libraries
http://www.nlm.nih.gov/medlineplus/
Library associations
http://caphis.mlanet.org/
Professional associations
http://www.nmha.org/
Pharmaceutical companies and other health care providers
http://www.gsk.com/yourhealth/index.htm
Hospitals
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http://www.unchealthcare.org/
Bookstores
http://www.healthyshopping.com/books/
Health professionals
http://www.cdcskin.com/
Self help groups
http://aaia.ca/en/index.htm
Newspapers and magazines
http://www.newsobserver.com/news/health_science/
http://www.consumerreports.org/oh/index.htm
http://www.wellnessletter.com/
http://www.mayoclinic.com/
and your favorite health information sources.
Select evaluation checklist to review for the next class.
Jan 31
EVALUATING CHI SOURCES
We will review a number of resources for evaluating the quality of CHI resources. Each person
in the class will lead the discussion on one of the resources.
Here are some questions to think about as you prepare for the discussion:
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If the checklist is intended for the use of consumers, how easy is it to use?
What assumptions are being made by the authors of the checklist?
Are there other issues of concern not addressed by the checklist?
How well does the checklist work to evaluate an actual resource (or part of a resource,
such as an article)?
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Evaluative checklists and information:
HON Code of Conduct (HONcode) for medical and health Web sites
http://www.hon.ch/HONcode/Conduct.html (contains audiofiles)
http://www.ihealthcoalition.org/ethics/code-foundations.html
Evaluating health websites: Content evaluation guidelines (part of ‘A User's Guide to
Finding and Evaluating Health Information on the Web’ – scroll down)
http://www.mlanet.org/resources/userguide.html
Evaluating health websites http://nnlm.gov/outreach/consumer/evalsite.html
How to spot a ‘quacky’ website
http://www.quackwatch.org/01QuackeryRelatedTopics/quackweb.html
How to evaluate health information on the Internet
http://www.fda.gov/oc/opacom/evalhealthinfo.html
How To Evaluate Health Information on the Internet: Questions and Answers
http://www.cancer.gov/cancertopics/factsheet/Information/internet
Web site application drill (an interactive evaluation form)
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http://www.health.gov/scipich/IHC/webdrill.htm
Wikipedia article on readability tests
http://en.wikipedia.org/wiki/Category:Readability_tests
Decide on who will review websites for next week.
Be prepared to discuss the NIH Senior Health Toolkit for Trainers
http://nihseniorhealth.gov/toolkit/toolkit.html
Reading: Hendler, G.Y. (2004). Why evidence-based medicine matters to patients. Journal of
Consumer Health on the Internet, 8(2):1-14.
Feb 7
APPLYING THE EVALUATION CRITERIA TO WEB SITES
Each person will examine one of the following websites and discuss the ways in which the site
does or does not meet the evaluation criteria covered on Jan 31.
Health information websites
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Feb 14
Men’s Health: Tons of Useful Stuff
http://www.menshealth.com/cda/homepage.do?source=rodale
http://www.freeweightloss.com/
Diabetes Breakthrough http://tinyurl.com/m6w7a
Welplex Center for Nicotine Dependency http://www.nosmokeamerica.com/
Afraidtoask.com http://www.afraidtoask.com/askdoc/
Cure or Prevent Cancer naturally with Vitamin B17 ~ Amygdalin ~ Laetrile ~ Apricot
seeds and more http://www.1cure4cancer.com/
Cancer Supportive care http://www.cancersupportivecare.com/
Tom Flemming’s consumer health website http://hsl.mcmaster.ca/tomflem/top.html
PRESENTATION OF ASSIGNMENT 1
Evaluate three health information resources (one website, one pamphlet and one magazine or
newspaper article) on the basis of content, accuracy and intended audience. Select your website
from the MLA Encyclopedic Guide to Searching and Finding Health Information on the
Web listed at the beginning of the course guide. Bring the resources to class if possible. A
computer will be available to access the website. Come to class prepared to discuss the strengths
and limitations your sources and prepare a one page handout with bibliographic information
and a brief summary for each source that can be shared with the class. Due Feb 14. 15% of
course grade.
Feb 21
THE HEALTH REFERENCE INTERVIEW
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Readings:
National Network of Libraries of Medicine (NNLM) Guidelines on Health Reference Interview
and Ethical Issues http://nnlm.gov/outreach/consumer/ethics.html
Thomas, D.A. (2005). The consumer health reference interview. Journal of Hospital
Librarianship, 5(2): 45-56.
Feb 28
WHATS OUT THERE? HEALTH INFORMATION SERVICES
We will discuss a variety of health information services in libraries, health care organizations
and on the web.
MLA Statement on the librarian’s role in the provision of consumer health information and
patient education (http://caphis.mlanet.org/resources/caphis_statement.html )
Hilligoss, B. & Silbajoris, C. (2004). MedlinePlus Goes Local in NC: The Development and
Implementation of NC Health Info. Journal of Consumer Health on the Internet, Vol. 8(4):9-26.
Jenkins, C.J., Marshall, J.G., & Duffee, D. (2004). MedlinePlus Goes Local in NC:
Context and Concept. Journal of Consumer Health on the Internet, Vol. 8(4):1-8.
Henry Ford List of Evidence-based Consumer health resources
http://www.henryford.com/body_nologin.cfm?id=39404
Mar 6 – Class cancelled
Mar 13 – Spring break – no class
Mar 20
THE HISTORY AND DEVELOPMENT OF CHI
What are some of the influences upon the provision of consumer health/patient education in U.S.
culture?
Readings:
 Perryman, C. (2006, July). Medicus Deus: a review of factors affecting hospital library
services to patients between 1790-1950. Journal of the Medical Library Association,
94(3):263-270.
 Panella, N.M. (1996, January). The patients’ library movement: an overview of early efforts
in the United States to establish organized libraries for hospital patients. Bulletin of the
Medical Library Association, 84(1):52-62.
 Eysenbach, G. & Diepgen, T.L. The role of e-health and consumer health informatics for
evidence-based patient choice in the 21st century. JMIR, 2001 19: 11-17.
Mar 27
PRESENTATION OF ASSIGNMENT 2.
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Conduct a health reference interview with someone who needs health information and
design a search strategy. Come to class prepared to discuss your experience and search
strategy and report on your results in a two page handout with the class. In advance of the
class, you should also give a copy of the search results to the person needing the information
and discuss their response in the class. Due March 27. 20% of course grade.
Apr 3 HEALTH POLICIES AND HEALTH INFORMATION
The provision of health information in various settings is very much affected by health policy
documents. This class is built around the framework of Healthy Carolinians 2010 as a basis for
discussion of how health information and information services fit in with such initiatives.
From the Healthy Carolinians website, “North Carolina 2010 Health Objectives”
http://www.healthycarolinians.org/healthobj2010.htm Please focus on the sections entitled
Executive Summary and Eliminating Health Disparities.
Health People 2010. The federal health promotion strategy. http://www.healthypeople.gov/
United Nations Health for All European Initative http://www.euro.who.int/hfadb
Apr 10
PRESENTATION OF ASSIGNMENT 3
- Pathfinder
Select a broad health topic such as heart disease, obesity or exercise that related to the
priorities identified in Health Carolinians. Design a pathfinder or resource guide on the
topic that includes key portals, specific websites, books, magazine articles, self help groups
and any other CHI resources that would be of interest to health information seekers. The
guide should designed as a two page handout that can be distributed to other members of the
class. Come prepared to discuss the process you used to prepare your guide and the results.
Come to class prepared to discuss your guide. Discuss your topic choice with the instructor
by March 20. Due April 10. 30% of course grade.
Apr 17
SPECIAL ISSUES IN CHI PROVISION
We will discuss ethical issues including patient privacy, health literacy, health disparities
and the increasing interest of complementary and alternative therapies.
History of Research Ethics http://www.unlv.edu/Research/OPRS/history-ethics.htm
Del Carmen, M.G., Joffe, S. (2005). Informed Consent for Medical Treatment and Research: A
Review. Oncologist, 10:636-641. http://theoncologist.alphamedpress.org/cgi/reprint/10/8/636
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Anderson, R. (1999, April). A case study in integrative medicine: alternative theories and the
language of biomedicine. Journal of Alternative & Complementary Medicine, 5 (2): 165-73,
175-6.
April 24
PRESENTATION OF ASSIGNMENT 4 - Experience of health and illness
4. Select a book to read during the semester from the bibliography provided by the instructor
or another approved work. Inform the instructor of your choice by Feb 7. The final class
session will provide an opportunity to share your thoughts about the book and how it relates
to conceptions of health and disease and health information needs. Provide a one page
handout with complete citation and your comments on the book to share with other students
during the discussion on April 24. 15% of course grade.
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