Among the "special populations" whose health-related information needs will be discussed are persons living with AIDS/HIV disease, children, those with chronic diseases, persons of color, the disabled, the dying, the elderly, those of limited literacy, gay/lesbian/bisexual people, the homeless, those with mental illnesses, pet owners, the poor, prisoners, refugees, teens, women, and men. The role of their family, friend, or neighborhood caregivers as information seekers will also be discussed.
This course is especially appropriate for those interested in working in medical and public libraries, healthcare organizations, community agencies, middle and high school library media centers, and academic libraries with students intending careers in the helping or service professions.
The first seven sessions provide a general background to the problems and issues of Consumer Health Information (CHI), with a special emphasis on issues in collection development.
Session 1
Introduction; Sites & Providers; Local & National Resources;
Users of CHI
Session 2
Literacy Levels; Medical Terminology; MEDLINE, CINAHL, and Other Online
Sources of Indexing for CHI Materials
Session 3
Formats for Information; Collections Development;
Reviewing Sources
Session 4
Standards and Policy Statements; Liability and Disclaimers;
Facilities Planning; Staffing Needs; Organization Schemes; Classifications
Session 5
Information Behaviors of Consumers, Patients,
and Their Caregivers; Consumer Health Information (CHI) for Sale:
Information Brokers and Freestanding CHI Centers
Session 6
Consumer Health Information in the Public Media: The Role of Print and
Broadcast Journalism; Audio-visual Materials; the Internet and World Wide
Web Materials; Consumer Informatics
Session 7
Alternative/Complementary Medicine Information and Services;
Drug Information and Services; Nutrition Materials and Services.
The next seven sessions deal with several "special populations"
and their specific CHI needs, as well as specialized collections,
services and materials developed for these groups.
Session 8
Legal, Economic, and Faith-based Materials and Services;
Materials and Services for the Poor, the Homeless, and Prisoners
Session 9
Materials and Services for those with Chronic Diseases, the Disabled, those
with Mental Illness, and Persons Living with AIDS/HIV Disease; the Hospice
Movement and CHI Materials and Services for Those who are Dying
Session 10
Age-related Issues in CHI: Pediatric Materials and Services;
Materials and Services for Young Adults; Geriatrics Materials
and Services; CHI Materials and Services for Pet Owners
Session 11
Issues of Ethnicity and CHI: Materials and Services for African
Americans; the Highmark Minority Health Link Project
Session 12
Issues of Ethnicity and CHI: Materials and Services for Hispanic
and Latino People, Asian Pacific Peoples, and Native Peoples
Session 13
Gender Issues in CHI Materials and Services: Services and Materials for
Women; the Men's Health Movement
Session 14
Minority Issues in CHI Materials and Services:
Gay/Lesbian/Bisexual Materials and Services; Services and Materials for
Refugees
Session 15
The Professional Presentation Session
1. Attendance & active participation in class
2. Readings as assigned
3. Active participation in the class e-list
4. 12 exercises
5. Weekly discussions of the "clipping of the week"
6. Weekly discussions of the "reference question of the
week"
Additional readings may be assigned throughout the course of the term.
The required text for the course will be:
National Network of Libraries of Medicine. South Central Region. Consumer Health: An Online Manual. Houston TX: Houston Academy of Medicine-Texas Medical Center Library, 2000. [hereinafter cited as Consumer Health: An Online Manual] http://www.nnlm.nlm.nih.gov/scr/conhlth/manualidx.htm
RESOURCES FOR WRITING PAPERS AND PREPARING PRESENTATIONS
--. A Poster Worth a Thousand Words: How to Design Effective Poster
Session Displays. Journal of the American Dietetic Association 1993;
93(8):865-866.
Centers for Disease Control and Prevention. National Center for Health Statistics. How to cite electronic media. http://www.cdc.gov/nchs/howto/sitelec/citelec.htm
Connor CW. The Poster Session--A Guide for Preparation. Denver: USGS, 1988. 12 pp. [ERIC document]Dzurinko MK. Giving presentations with pizazz. Information Outlook 1999; :34-36.
Harig KJ et al. The Librarian's Idea Book. Research, Innovations, Solutions from ALA Poster Sessions. Chicago: ALA, 1993. Introduction "What Are Poster Sessions?", pp. ix-xii.
Huth EJ. How to Write and Publish Papers in the Medical Sciences. 3rd ed. Baltimore: Williams & Wilkins, 1990.
Amedeo/Instructions for authors. http://www.Instructions4Authors.com
[Instructions for Authors from medical journals] http://www.mco.edu/lib/instr/l ibinsta.htmlLevine MA. Creating posters for humanities & social sciences. http://exodus.lcsc.edu/ss150/post er.htm
Medical Library Association. Style Manual. http://www.mlanet.org /publications/style/index.html
Medical Library Association. Guidelines for Converting an Oral Presentation to a Manuscript for Publication. http://mlanet.org/publications/bmla/convert.html
Occupational Safety and Health Administration. Presenting Effective Presentations with Visual Aids. http://www.osha-slc.gov/doc/outreachtraining/htmlfiles/traintec.html
Rupnow J, King JW. A primer on preparing posters for technical presentations. Food Technology 1995; : 93-102.
Talking science: How to prepare for presentations. http://www.biomednet.com/hmsbeagle/69/notes/adapt [requires free registration; has links to five additional sites for tips on giving presentations]
Welch HG. Preparing manuscripts for submission to medical journals: the paper trail. Effective Clinical Practice 1999; 2(3):131-7.
Choose a book that is a patient/consumer/caregiver narrative, clear your
choice with the instructor, read it, and write an evaluative review for
your colleagues. The reviews will be shared electronically so that each
participant will have the recommendations from all other classmates. Each
student will read a different title. The review should be posted to the
class alias by 11am on the due date so that the entire class can benefit
from your review and evaluation. A short list of appropriate books
appears here; please feel free to choose other titles as long as you
clear your choice with the instructor.
A Short/Selective Bibliography of Patient and Caregiver
Narratives
AIDS/HIV DISEASE
Ashe A. Days of Grace: A Memoir.
Burns SA. Sarah's Song: A Ture Story of Love and Courage.
Glaser E, Palmer L. In the Absence of Angels: A Hollywood Family's
Courageous Story.
Senak M. Fragile Circle: A Memoir.
ALZHEIMER DISEASE
Artley B. Ginny: A Love Remembered.
Bayley J. Iris: A Memoir.
Bayley J. Iris and her Friends : a Memoir of Memory and Desire.
CANCERS
Rollin B. First You Cry.
Grealy L. Autobiography of a Face.
Handler E. Time on Fire: My Comedy of Terrors.
Lorde A. Cancer Journals.
MacPherson, M. She Came to Live Out Loud: An Inspiring Family Journey
Through Illness, Loss, and Grief.
Picardie R, Seaton M, Picardie J. Before I Say Goodbye.
Radner G. It's Always Something.
Tilberis L, Ball AL. No Time to Die.
Gaynes F. How Am I Gonna Find a Man if I'm Dead?
HEART DISEASE AND STROKE
Cole HA, Jablow MM. One in a Million.
Grizzard L. I Took a Lickin' and Kept on Tickin'(and Now I Believe in Miracles).
McCrum R. My Year Off: Rediscovering Life After a Stroke.
Sarton M. After the Stroke: A Journal.
Sylvia C, Novak W. A Change of Heart: A Memoir.
MENTAL ILLNESS
Grandin T. Thinking in Pictures : and Other Reports From my Life With Autism.
Handler L. Twitch & Shout : a Touretter's Tale.
Hornbacher M. Wasted : a Memoir of Anorexia and Bulimia.
Jamison, KR. An Unquiet Mind.
Kaysen S. Girl, Interrupted.
Knapp C. Drinking: A Love Story.
Slater L. Prozac Diary.
Styron W. Darkness Visible: A Memoir of Madness.
NEUROLOGIC DISEASES
Albom M. Tuesdays with Morrie.
Bauby J-D. The Diving Bell and the Butterfly.
Gottstein EG. Recalled to Life; the Story of a Coma.
Webster BD. All of a Piece: A Life with Multiple Sclerosis.
CAREGIVERS
Dorris M. The Broken Cord.[adopted child's fetal alcohol syndrome]
Humphry D, Wickett A. Jean's Way. [companion's breast cancer]
Lear MW. Heartsounds. [spouse's heart attack]
Lerner G. A Death of One's Own. [spouse's brain cancer]
Peabody B. The Screaming Room: A Mother's Journal of her Son's Struggle
with AIDS
Rollin B. Last Wish. [mother's ovarian cancer]
COLLECTIVE BIOGRAPHY
Krementz J. How It Feels to Fight For Your Life. [teens with chronic
illnesses]
Sheed W. In Love with Daylight: a Memoir of Recovery.
PHYSICIAN AS PATIENT
Payne JE. Me Too: A Doctor Survives Prostate Cancer.
Rosenbaum EE. A Taste of My Own Medicine: When the Doctor Is the Patient.
Sacks O. A Leg to Stand On.
Choose an item that is a consumer-oriented CHI "reference" book, clear your choice with the instructor, read it, and write an evaluative review for your colleagues. The reviews will be shared electronically so that each participant will have the recommendations from all other classmates. Each student will review a different title. The review should be posted to the class alias by 11am on the due date so that the entire class can benefit from your review and evaluation.
A Selective List of Consumer Health Magazines and
Newsletterss
Choose two audiovisuals--one in a video format and one in an audio format--that deal with the same topic and that are designed for a consumer
health-oriented audience; clear your choices with the instructor,
view/listen to them, and write an evaluative review for your colleagues.
The reviews will be shared electronically so that each participant will
have the recommendations from all other classmates. Each student will
review different non-print materials. The reviews should be posted to the
class alias by 11am on the due date so that the entire class can benefit
from your review and evaluation.
Hardin Meta Directory
http://www.lib.uiowa.edu/hardin/md
Health A-to-Z http://www.healthatoz.com/
Health Notes from Your Family Physician
http://www.familydoctor.org/
Health on the Net World-Wide
http://www.hon.ch/
HealthAnswers
http://www.healthanswers.com/
HealthCentral
http://HealthCentral.com/home/
home.cfm
healthfinder
http://www.healthfinder.gov
Healthtouch
http://www.healthtouch.com/
Healthwide http://www.healthwide.com
Intelihealth
http://www.intelihealth.com
MEDEM
http://www.medem.com/
Medical Matrix
http://www.medmatrix.org/
Medical World Search
http://www.mwsearch.com
MEDLINE Plus.
http://medlineplus.nlm.nih.gov/medlineplus/
Medsite
http://www.medsite.com
Michigan Electronic Library - MEL Health
http://mel.lib.mi.us/health/
NetWellness
http://www.netwellness.org
NOAH: New York Online Access to Health
http://www.noah-health.org/
WebMD
http://webmd.lycos.com/
Choose a television show or regularly-broadcast television segment, or a regularly-broadcast radio program that is consumer health-oriented, clear your choice with the instructor, watch or listen to at least one week's worth of it (if it is a daily show) or two week's worth (if it is a weekly show), and write an evaluative review for your colleagues. The reviews will be shared electronically so that each participant will have the recommendations from all other classmates. Each student will review a different show or segment or program. The review should be posted to the class alias by 11am on the due date so that the entire class can benefit from your review and evaluation.
Choose an item that is a consumer-oriented CHI title that is from a "complementary or alternative" point of view, clear your choice with the instructor, read it, and write an evaluative review for your colleagues. The reviews will be shared electronically so that each participant will have the recommendations from all other classmates. Each student will review a different title. The review should be posted to the class alias by 11am on the due date so that the entire class can benefit from your review and evaluation.
In consultation with the instructor, and no later than the second week of class, choose one general consumer health site or provider, and arrange to interview the librarian or manager. In a short paper of no more than 2 pages, describe the physical facilities, users, services, staffing, collections, publications, etc. Please turn this paper into the instructor, not the class alias.
Then repeat the process for an information site, service, or source that is focused on a single disease, treatment, special population, or type of information. Please turn this second site visit paper into the instructor, not the class alias.
Each member of the class will do two visits. There is to be no overlap of sites among members of the class! Feel free to choose a site or individual near where you live or work, but please do not choose any site where you now work or are an intern, or have worked or interned in the past, or which you have visited for another class.
Please turn this into the instructor by 10am on the due date in "camera-ready" form, so that it can be duplicated for class distribution.
Subscribe to CAPHIS, the listserv-tm discussion list of the Consumer and Patient Health Information Section of the Medical Library Association.
You can either subscribe directly from the CAPHIS website at http://caphis.njc.org/, or you can
subscribe directly by sending an email message
to: listserv@hslc.org
(leave the subject line blank)
(send ONLY this message)
subscribe CAPHIS yourfirstname yourlastname
Please read CAPHIS faithfully for three months. You should then review this list-lurking experience in a paper of no more than 2 pages. Turn this paper into the instructor, not the class alias.
You should feel free to comment on and quote from the list traffic on our class alias, as appropriate.
You should choose a topic relating to a current issue in the consumer health information field. This should be a professional LIS issue, not a disease or treatment issue.
In consultation with the instructor, choose a problem that interests you personally or one that needs to be accomplished professionally. You might want to write a collection development policy for consumer health materials for a particular library, or evaluate a consumer health or patient education service that already exists. You might want to create a Web site or a guide to Internet resources for a particular client group. You might want to attempt a publishable review of the literature on a CHI problem for a professional journal. Clear your choice of topic with the instructor.
Please prepare a poster, or a talk of 10 minutes duration, or a educational session of 10 minutes, or some kind of 10 minute presentation for a professional meeting, etc., on the topic. Clear your choice of presentation format with the instructor.
You must prepare a structured abstract for your work, and a 2-page handout/bibliography for presentation to your peers. Posters or talks or presentations or sessions will be presented in class on the due date. Structured abstracts must be submitted electronically to the instructor one week prior to the presentations; the presentations--posters, talks, sessions, etc.--will be presented to the colleagues on the last day of class.
IF you choose this option, you may focus ALL your written work for this
class on a particular special population--ie. persons living with AIDS/HIV
disease, children, those with chronic diseases, persons of color, the
disabled, the dying, the elderly, gay/lesbian/bisexual people, the
homeless, those of limited literacy, those with mental illnesses, pet
owners, the poor, prisoners, refugees, teens, women, men, or any other
population that you would like to investigate.
Please discuss your choice with the instructor and make this decision by
the second week of class.
Please choose and use a standard citation style and style manual whenever you cite the work of another; a good choice for those interested in medicine is the Uniform Requirements for Manuscripts Submitted to Biomedical Journals which may be found on the World Wide Web at http://www.acponline.org/journals/annals/01jan97/unifreqr.htm
Those interested in academia may want to use the Publication Manual of
the American Psychological Association, while those interested in a
style manual suited to the general public might want to use the Manual
for Writers of Term Papers, Theses, and Dissertations, by Kate L.
Turabian, published by the University of Chicago Press. Both titles are
regularly available in libraries and bookstores.
Inclusive language: Gender-inclusive language is required in all course
work. The use of respectful language in any situation is not a matter of
political correctness but one of simple courtesy.
Students with disabilities who require special accommodations or other
classroom modifications should notify the instructor and the University's
Office of Disability Resources & Services (DRS) no later than the 2nd week
of the term. Students may be asked to provide documentation of their
disability to determine the appropriateness of the request. DRS is
located in 216 William Pitt Union and can be contacted at 648-7890
(Voice), 624-3346(Fax), and 383-7355(TTY).
Students who must miss an exam or class due to religious observances must
notify the instructor ahead of time and make alternative arrangements.