Consumer Health Information

INLS890-096 Consumer Health Information Syllabus

Instructor: Professor Joanne Gard Marshall, AHIP [email protected] 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:

 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

1 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, evidence- based 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: Neil- Schuman 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

2 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).

3 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.

 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?

4  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 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.

5 Here are some questions to think about as you prepare for the discussion:

 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)? : 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) 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.

6 Health information websites

 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

Feb 14 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

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.

7 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.

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”

8 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

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.