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Consumer Health Information
(6 hour course)

A Workshop for Librarians Providing Health Information to the Public

Welcome & Introductions:

Introduce instructor(s)
Introduce participants
Introduce course outline and materials
Go over information on computer lab/facilities breaks
Attendance sheet
Start web browsers

What is CHI?

CHI is defined as any information that enables individuals to understand their health and make health-related decisions for themselves and their families (Patrick and Koss, 1995). This includes information supporting individual and communityhealth promotion or enhancement, self-care, shared decision making (professional-patient), patient education, rehabilitation, using the health care system, selecting insurance or a provider. It can be actively sought, or provided through campaigns targeting specific health issues.

To be effective, CHI must be tailored to the interests, literacy, language, cultural background, emotional state and desire of its user (Patrick and Koss, 1995). Consumer Health Information "White Paper" http://www.nist.gov/
Consumer Health Information and Patient Education Definition
Consumer Health information (CHI) is information on health and medical topics provided in response to requests from 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, initiated by a health professional, whose aim is to impart knowledge, attitudes and skills with the specific goal of changing behavior, increasing compliance with therapy and, thereby, improving health.

CHI and patient education overlap in practice, since patient behavior may change as a result of receiving health information materials. Patient education and CHI often differ in terms of the setting in which the process occurs, rather than in terms of the subject matter. - from The Librarian's Role In The Provision Of Consumer Health Information And Patient Education http://caphis.mlanet.org/resources/caphis_statement.html

Trends Driving Consumer Health Information:

Self Care
Managed Care
World Wide Web & Information Technology:
Complementary and Alternative Medicine (CAM) http://nccam.nih.gov
National Library of Medicine and Health Information for the Public http://www.nnlm.nlm.nih.gov/psr/lat/v8n4/nlmhealthinfo.html

Issues in Consumer Health Information

Accuracy
Authority
Bias
Currency
Reading Level
Cultural Diversity
see also U.S. Census Bureau Population Topics
see also Basic Tables - Urban Information Center, University of Missouri St. Louis
see also Transcultural and Multicultural Health Links
Disclaimers

Consumer Health Information Sources

Family Doctor, Office Staff, Pamphlets in Doctor's Office
Pharmacy/Pharmacist
Family and Friends
Newspapers, Magazines
Public Libraries, Medical Libraries (if open to the public)
TV, Radio
Internet

Who is Formally Involved in the Dissemination of CHI?

Public Libraries (the primary access point for patrons seeking CHI)
Medical Libraries (the authoritative source, but not always open to the public)
Networks and Partnerships (training, resource sharing, referrals, ILLs, listservs)
NLM (evaluator, provider, enabler, supporter)
NN/LM (program developer, promoter, supporter, collaborator, educator)

Networks, Partnerships, and Referrals

Network Members or Partners
The Role of Health Science Libraries (Hospital and Academic)
The Role of Public Libraries
The Role of Community/Public Health Organizations
The Role of the Librarian
see also The Librarian's Role in the Provision of Consumer Health Information and Patient Education http://caphis.mlanet.org/resources/caphis_statement.html

The Interview

Confidentiality
Empathetic listening
Non-judgmental
Listen more - talk less
Who is the information for?
Are the terms correct?
Is it spelled correctly?
Do you need to refer the patron back to the doctor for the correct term/spelling?
see also Guidelines on Medical Questions http://www.nlc.state.ne.us/ref/star/chapter9.html

"One challenge medical librarians meet when they meet consumers is that medical librarians are not trained in handling emotional issues and the emotions consumers bring in with them. Behind the factual questions a consumer often has unstated or hidden questions like: What is wrong with me...? How serious is it...? Will I need surgery...? How much does it cost?... How will it affect my life...?"

Disclaimers

This is Information ONLY -
NOT Advice,
NOT A Recommendation,
Not an Interpretation and
DEFINITELY NOT A Diagnosis.

Here is an exercise on locating and examining disclaimers on health information sites selected by participants. http://www.nlc.state.ne.us/ref/star/chapter9.html

Samples:
HEALTHWEB: Consumer Health is designed for educational purposes only and is not engaged in rendering medical advice or professional services. Any medical or other decisions should be made in consultation with your doctors. UIC and the Library of the health Sciences will not be held liable for any complications, injuries or other medical accidents arising from or in connection with the use of or reliance upon any information on the web.

NLM and MEDLINEplus: It is not the intention of NLM to provide specific medical advice, but rather to provide users with information to better understand their health and diagnosed disorders. Specific medical advice will not be provided, and NLM urges you to consult with a qualified physician for diagnosis and for answers to your personal questions.

ADAM.COM:The Content is presented in summary form only and intended to provide broad consumer understanding and knowledge of health care topics. The information should not be considered complete and should not be used in place of a visit, call, consultation or advice of your physician or other health care provider. Information obtained by using the Website is not exhaustive and does not cover all diseases, ailments, physical conditions or their treatment. Should you have any health care-related questions, please call or see your physician or other health care provider promptly. User should never disregard medical advice or delay in seeking it because of something you have read here. User is encouraged to consult other sources and confirm the information contained within the Website.

"Be careful of reading health books. You may die of a misprint."- MARK TWAIN

BREAK - 15 minutes

Setting Up and Managing a Consumer Health Library

How Do You Set Up and Run a Consumer Health Library? (CAPHIS) http://caphis.mlanet.org/resources/index.html

Mission
examples - Oregon: Planetree Health Resource Center,
Hawaii Medical Library, Consumer Health Information Service
Comprehensive Cancer Care Center, University of Michigan
Patrons/Community Needs
Goals/Purpose
Budget
Library or Health Care Networks
Collection Development - It depends on a lot of things like your mission, your goals, your budget, the demographics of your community (cultural diversity, population age, income, predominant illnesses, cause of death), and patron requests to name a few.

Media Options

Having a variety of media allows the CHL to accommodate different learning styles. For example some people prefer to hear information, others prefer to read it, and others learn best through a combination of media - audio, video, hands-on, reading. Still, others want convenient access to the information. Because of these differences a variety of media in different levels of difficulty, and different languages to meet the needs of patron diversity is a way of having something available for most members of the community, or the targeted audience.

Print Media

Most affordable. Allows review of information, can be shared, good for instructions.

List of Recommended Publications:

Core Bibliography of Consumer Health Reference Books - Healthnet: Connecticut Consumer Health Information Network, Lyman Maynard Stowe Library, University of Connecticut Health Center, Farmington, CT http://library.uchc.edu/departm/hnet/corelist.html
Consumer Health Library Collection Guide (CAPHIS) - Consumer and Patient Health Information Section of the Medical Library Association http://caphis.mlanet.org/resources/index.html#coldev
Consumer Health Bibliography for the Small Public Library (CAPHIS) http://caphis.mlanet.org/resources/ConsHealthBib.html
Selected Consumer Health Collection Development Tools - Consumer Health Reference Center @ Treadwell Library, Massachusetts General Hospital, Boston, MA http://www.mgh.harvard.edu/library/chrc/bookreviews.htm
Consumer Health Magazines and Newsletters - Healthnet: Connecticut Consumer Health Information Network http://library.uchc.edu/departm/hnet/nlist.html

Books

Available in hardcover and paperback. Some resources are published only in paperback, and because of the subject matter the books do not need to last for years. They will probably become outdated before they wear out and need replacing. May or may not circulate.

Brochures and Pamphlets

Good source of prevention and screening information. They provide an overview of a medical topic, and may completely meet a consumer's information need. They help consumers formulate questions to ask health professionals, and they help them identify areas they would like more information about. Good quality brochures are available from the federal government, and professional associations such as medical societies and national health organizations. These organizations may have web sites that offer their brochures online.

Magazines and Periodicals

Provide information that is contemporary and popular. They may be classified as:

General Consumer Magazines - weekly and monthly magazines, which have a health and medicine section or column that, appears regularly (Time, Family Circle, Self)
Consumer Health Magazines and Health Newsletters - Listing available at Healthnet: Connecticut Consumer Health Information Network http://library.uchc.edu/departm/hnet/nlist.html
Professional Journals - (American Family Physician, JAMA, Postgraduate Medicine)
NIH Consumer Health Publications: http://health.nih.gov/

Audios and Videos

Affordable, price is decreasing.

Audios - relaxation, music or nature sounds for de-stressing, motivational (weight loss, smoking cessation), and books on tape are likely selections.
Videos - good for groups and demonstrations (how-to videos).

Electronic Media

Initially most expensive to establish a collection. Online information complements a print (book and magazine) collection. Good for fact sheets. Includes CD-ROMs, DVDs, and the Internet.

Internet - access is convenient, disabilities do not present barriers.
Online support groups
Directories - find a doctor, dentist, hospital, clinic, nursing home, insurance company.
Listservs or News Groups
Libraries (Digital Libraries)should consider:
- Mission
- Audience
- Purpose
- Maintenance
- Feedback
- Forms

Categories to Include in a Digital Library

Consumer Health Resources

General Consumer Health Resource: http://nnlm.gov/mar/consumer_health/consumer.html
Consumer Health Resources on the Internet: http://library.uchc.edu/departm/hnet/inters.html
BioMedicine and Health in the News: http://library.uchc.edu/bhn/
Consumer Health Internet Resources: http://www.mgh.harvard.edu/library/chrc/resources.html
Resource Samplers: http://nnlm.gov/train/sample/
Consumer Health: University of Illinois at Peoria, Library of the Health Sciences: http://www.uic.edu/depts/lib/lhsp/resources/consumer.shtml
HealthWeb: General http://healthweb.org/index.cfm

Minority Health

Non-English Sites
Locating Spanish Language Health Information on the World Wide Web http://nnlm.gov/scr/techsheets/king.html

Complimentary & Alternative Medicine

HealthWeb: Alternative/Complementary Medicine http://healthweb.org/browse.cfm?subjectid=24
National Center for Complementary and Alternative Medicine (NCCAM) http://nccam.nih.gov/

Rural Health

Internet Sampler: Rural Health http://nnlm.gov/pnr/samplers/rural.html
HealthWeb: Rural Health http://healthweb.org/browse.cfm?categoryid=1054

Medical Dictionaries/Terminology Resources

MedicineNet: http://www.medicinenet.com/Script/Main/AlphaIdx.asp?p=A_DICT
Medical Dictionaries and Glossaries: http://www.nthames-health.tpmde.ac.uk/connect/medical_dictionaries.htm
Medical Dictionaries: http://www.mel.lib.mi.us/health/health-dictionaries.html

Easy to Read Resources

Directories

Physicians and Other Health Professionals: http://www.nlm.nih.gov/medlineplus/directories.html
Hospitals and Other Health Facilities: http://www.nlm.nih.gov/medlineplus/directories.html
Health Insurance: https://www.ehealthinsurance.com/
Managed Care Plans: http://www.pueblo.gsa.gov/cic_text/fed_prog/mm_care/medcare.htm and http://www.medicare.gov/

Journals

Academic and Textbooks Publishers: http://www.libfind.unl.edu/libr/libs/cyt/publishers.html

Health Web Sites

Online brochures, fact sheets, FAQ, News, Links, and contact information are available through publications at MEDLINEplus http://www.nlm.nih.gov/medlineplus/publicationsontheweb.html, and also though organizations linked to MEDLINEplus: http://www.nlm.nih.gov/medlineplus/organizations.html

The following sites in particular provide online brochures, fact sheets, FAQ, News, Links, and contact information.

American Cancer Society: http://www.cancer.org/
American Medical Association (Click on Patients): http://www.ama-assn.org/
National Institutes of Health: http://www.nih.gov
American Nurses Association: http://www.ana.org
American Hospital Association: http://www.aha.org

BREAK/LUNCH

Evaluating Online Resources

Participants will be introduced to tools to use for health information web site evaluation, and will evaluate health information web sites for recommended criteria. There will be a demonstration using the participants choice of search engine health information web sites will be located and evaluated by the instructor and participants for the following criteria:

Authority - author(s), editor(s), advisors, board of directors
Contact Information
Content Accuracy
Currency
Purpose
Audience
Readability
Organization
Site Maintenance

Tools to Use for Web Site Evaluation

the following sites provide guidelines for evaluating health information on the Web:

Evaluating Online Resources http://nnlm.gov/scr/techsheets/evaluation.htm
Tips On Evaluating Web Resources http://nnlm.gov/gmr/publish/eval.html
MEDLINEplus Selection Guidelines http://www.nlm.nih.gov/medlineplus/criteria.html
Health On the Net Foundation (HON) Principles http://www.hon.ch/HONcode/Conduct.html
Quackwatch http://www.quackwatch.com/
The Megasite Project: A Metasite Comparing Health Information Megasites & Search Engines http://www.lib.umich.edu/megasite/