CHRC News

Vol.3 No. 3, April 2001





INTRODUCTION

How do you assist a patron who is unable to 
read beyond an eighth grade level?  Low-
literacy consumer health material is often 
much more difficult to locate than non-
English language information, yet the need 
for it is enormous. Cecilia Conrath Doak, in 
Teaching patients with low literacy skills 
(Lippincott, 1996) stated, "Literacy 
authorities tell us that 27 million American 
adults - nearly one out of five - may not be 
able to read a pamphlet."

In this issue, selected web sites which offer 
low-literacy or easy to read consumer health 
information are presented.  However, keep 
in mind that what is easy for some 
consumers may be very difficult for others. 
As Boston-based World Education's 
glossary, at 
http://www.worlded.org/us/health/docs/com
p/Introduction/define_terms.html states, 
"easy-to-understand" or "plain language" 
will depend on the needs, background 
knowledge, and interests of the readers.  
Keep in mind, too, that the only information 
available for topics such as rare genetic 
diseases or some forms of cancer is in 
medical textbooks or scientific web sites.

Also in this issue, some of the new titles in 
our consumer health collection will be 
highlighted in the In Print column.

As always, we would like to know what 
topics you'd like to see covered.  Our contact 
information is on the last page.

In the News

The Public Library and Consumer Health

Martha Stone, Treadwell Library's 
Coordinator for Reference Services, 
attended the first Public Library and 
Consumer Health conference held in 
January, 2001.  Subtitled "Meeting 
Community Needs through Resource 
Identification and Collaboration," it was 
sponsored by the Public Library Association 
(PLA), the Medical Library Association 
(MLA) and the National Library of 
Medicine (NLM), and was aimed at public 
library directors and administrators, 
collection development staff, community 
information specialists, and reference 
librarians. Some of the goals of this 
conference were to assist attendees in:

 - acquiring resources and development tools 
to establish a consumer health collection,

 - implementing processes for assisting 
patrons in finding health information, and

 - developing the ability to determine the 
authority, accuracy, purpose, and audience 
of a health information web site and its 
appropriate use as a consumer/public 
resource.

Public Library and Consumer Health 
Conference Keynote Speaker, Tom 
Ferguson, M. D.

Tom Ferguson, M.D., is the author of a free 
web-based newsletter, available at 
http://www.fergusonreport.com.  In his 
keynote speech, "The Empowered Medical 
Consumer," he discussed such topics as 
"patient-helpers" whom he described as a 
"vital new health care resource" and 
physicians' new allies in pointing out web 
sites.  He also focused on "online disease 
clubs" for a wide variety of concerns that do 
not replace, but enhance, professional care.  
He cited the web based Association of 
Cancer Online Resources, ACOR, 
http://www.acor.org, a cancer information 
system currently offering access to 99 
electronic mailing lists and a variety of web 
sites, as a example.  As a "wave of the 
future" he predicted 24-hour a day live chat 
with "e-docs." An example can be found at 
http://www.americasdoctor.com (sponsored by 
AmericasDoctor, a pharmaceutical service). 
Tom Ferguson said he is delighted to hear 
from librarians at his email address, 
doctom@doctom.com

Cultural Competency Resource Center

Making sure that MassHealth insurance 
recipients are receiving health care services 
appropriate for their language or culture is 
the goal of the Commonwealth of 
Massachusetts' Division of Medical 
Assistance (DMA)'s new Cultural 
Competency Initiative, whose motto is 
"Cultural Competency, Quality Healthcare 
for our Members." The DMA has organized 
a Cultural Competency Resource Center 
(CCRC) consisting of two librarian 
consultants, a library technical assistant, and 
a manager.  At the moment, they do not have 
a web site.  The CCRC Health Librarian 
Consultant is Peter Droese, at 617-210-5354 
or e-mail at pdroese@nt.dma.state.ma.us

MEDEM
http://www.medem.com/

Seven medical societies, including the 
American Medical Association (AMA), 
founded Medem.  Subtitled "Healthcare 
Information brought to you by the nation's 
medical societies," it includes information 
that had previously been found in the web 
sites of the AMA, the American Academy of 
Ophthalmology, the American Academy of 
Pediatrics, the American College of Allergy, 
Asthma & Immunology, the American 
College of Obstetricians and Gynecologists, 
the American Society of Plastic Surgeons,  
and the American Psychiatric Association. 
The Physician Finder section includes 
listings of specialists in several fields.  
Choose Medical Library to find consumer 
level information divided into topics, 
including Diseases and Conditions and 
Therapies and Health Strategies.  Every 
document's "complexity indicator" is 
indicated, ranging from introductory through 
professional.  For example, choose the broad 
subject area Health and Society, and click 
on Genetics.  Choose Human Genome 
Project from the  topics listed.  There are six 
documents listed, all considered "general" 
reading level.  The first is the Department of 
Energy's "Cloning Fact Sheet."  You can 
also search for a word or phrase using the 
Search function.  Documents retrieved are 
annotated with a "relevancy indicator."  For 
example, type skin cancer.  The first 
document, from the National Institute of 
Health (NIH), is noted as being 100% 
relevant and written on an introductory 
level.

Low-literacy Web Sites

ARCH's Health Literacy
http://www.mgh.harvard.edu/library/arch/literacy.asp
Access to Resources for Community Health 
(ARCH) is a partnership among Treadwell 
Library, the MGH Community Health 
Associates, the Massachusetts Prevention 
Centers Boston Office, and the Chelsea, MA 
Health Department.  The Health Literacy 
page includes links to pamphlets and 
programs on both local and national scales.

Medlineplus
http://www.medlineplus.gov

There are, to date, 64 documents available in 
the Medlineplus databases, in miscellaneous 
order.  Just type the phrase easy to read into 
the search box. If there's a specific topic 
you're seeking, such as cancer, type the 
phrase  easy to read and cancer.   When 
available, easy to read Spanish documents 
are also included.  Click on the topic, such 
as Juvenile Diabetes.  Do Your Level Best: 
Start Controlling Your Blood Sugar Today 
(National Institute of Diabetes and Digestive 
and Kidney Diseases) is the only document 
with the easy to read designation.  It covers 
a range of information but it should be noted 
that it does not include other information 
from the Juvenile Diabetes page, such as 
clinical trials, alternative therapy,  or 
research.

Medlineplus Tutorials
http://www.nlm.nih.gov/medlineplus/tutorials.html

These 29 tutorials take users through 
information on a disease (e.g. inguinal 
hernia, diabetes), diagnostic test (e.g. 
colonoscopy, MRI), or surgical procedure 
(e.g. hip replacement, breast cancer surgery).  
Information is presented in short sentences, 
with simple illustrations, and medical 
terminology is defined when appropriate.  In 
addition, each tutorial is fully narrated and a 
PDF version of the material can be printed. 
You can view the entire list of tutorials at the 
URL above, or you can link from individual 
health topic pages.  Two tutorials, diabetes 
and hypertension, are available in Spanish.

Healthfinder
http://www.healthfinder.gov

Lagging somewhat behind Medlineplus, 
healthfinder includes 23 easy to read 
documents.  Again,  type the phrase  easy to 
read into the search box. Use Medicine 
Safely is one of the documents, a succinct 
booklet telling how and why to take 
prescribed medications. Easy to read 
Spanish documents are included when 
available. Healthfinder's new web site is in 
beta testing, and comments are being 
solicited.  It is being redesigned to offer 
more customization and personalization, at 
http://www.healthfinder.gov/betatest.  Note 
that not all features are activated in this test 
site.

National Library of Medicine
http://www.nnlm.nlm.nih.gov/train/chi/easy.html
"Easy to Read Consumer Health 
Information" is an annotated list of  web 
sites from federal, regional, and national 
organizations. Easy to read Spanish 
documents are included when available. 

Health Promotion Council of 
Southeastern Pennsylvania 
http://www.hpcpa.org/materials.html

Health Promotion Council of Southeastern 
Pennsylvania (HPC) is a non-profit 
corporation organized in 1981. HPC's 
mission is to promote health and prevent 
disease, especially among those at greatest 
risk, through education, outreach and 
advocacy. HPC provides low-literacy 
health education materials in English, 
Spanish and a selection of Asian languages. 
The primary focus of most of these materials 
is chronic disease risk reduction and control, 
and features topics such as healthy eating, 
exercise, tobacco use, high blood pressure, 
and diabetes. 

Oncolink
http://oncolink.upenn.edu

Oncolink is the University of 
Pennsylvania's excellent cancer 
information web site.  Click on Search 
Oncolink, choose the Advanced Query 
mode, and from the drop-down menu, 
choose to search Everything Except 
Citations.  Type the phrase easy to read 
into the search engine, and you'll find over 
50 documents. "Recommended Reference 
List and Book Reviews" is one such 
example.  Click on it to find an OncoLink 
book review of Non-Hodgkin's 
Lymphomas:  Making Sense of Diagnosis, 
Treatment & Options.  The Oncolink 
reviewing physician is quoted as saying that 
it is an "easy to read book containing a lot of 
helpful information." 

World Education's Health and Literacy 
Compendium
http://www.worlded.org/us/health/docs/comp/

World Education is a Boston-based non-
profit organization dedicated to improving 
the lives of the poor through economic and 
social development programs. The Health 
and Literacy Compendium was written 
with two main goals in mind: to help literacy 
teachers and students find and use health 
information and to share literacy information 
and easy to read health materials with health 
professionals, community educators, and 
patients. Each citation includes a description 
and ordering information. At the back of the 
Compendium is a list of key organizational 
resources; publishers and distributors in the 
health and literacy fields, many of whom 
produce easy to read and multilingual 
brochures and pamphlets; and indexes by 
subject, language, reading level, and 
document format.

Readability Analysis of Consumer 
Health Materials
http://www.nnlm.nlm.nih.gov/scr/conhlth/read.htm 

Readability Analysis of Consumer Health 
Materials was compiled by Dixie Jones 
Reference Librarian, Louisiana State 
University Health Science Center Library, 
Shreveport, LA.  The "Web Resources" 
section lists sources for finding information 
for patients with low literacy levels.

Clear and Simple
http://rex.nci.nih.gov/NCI_Pub_Interface/Cl
ear_and_Simple/HOME.HTM

Subtitled "Developing Effective Print 
Materials for Low-Literate Users" this guide 
outlines a process for developing 
publications for people with limited literacy 
skills. The process was derived from 
communications, health education, and 
literacy research and practice. The five 
standard steps in developing print materials, 
each of which is thoroughly discussed in this 
web site, are defining the target audience, 
conducting target audience research, 
developing a concept for the product, 
developing content and visuals, and pre-
testing and revising draft materials.

Keep in mind that some web sites place 
hyphens in the phrase  easy to read.  Thus, 
when you're using your browser's "find" 
feature to look for that phrase, you may 
sometimes have to insert hyphens.

In Print in Treadwell's 
Consumer Health Collection

A plethora of new titles are available in our 
Consumer Health section, and a few new 
books are highlighted below.

American Cancer Society's guide to 
complementary and alternative cancer 
methods / [foreword by David S. 
Rosenthal] / Atlanta, Ga. : American Cancer 
Society, 2000.  Arranged in broad topic 
areas (mind/body/spirit; manual 
healing/physical touch; pharmacological/ 
biological), this readable guide covers many 
commonly used alternative methods, e.g. 
cat's claw.  Warnings are prominently 
placed, and bibliographic references include 
web sites.  

Consumer guide to long-term care / Gary 
Ilminen /Madison, Wis. : University of 
Wisconsin Press, 1999.  The author is a 
registered nurse and health care 
administrator who has great familiarity with 
long-term care.  This book is a readable 
guide that helps to demystify virtually every 
aspect of the field, both legal and medical.

The Consumer health information source 
book / edited by Alan M. Rees/ Phoenix, 
AZ : Oryx Press, 2000.  The sixth edition of 
this valuable text contains evaluations of 
over 600 books (of which 144 relate to 
alternative medicine), 170 popular health 
magazines, 1,500 English-language 
pamphlet titles, 640 Spanish-language 
pamphlet titles, and more.  The content is all 
new and does not duplicate previous 
editions.  This book is a treasure trove of 
information.

Dr. Susan Love's breast book / Susan M. 
Love, with Karen Lindsey ; illustrations 
by Marcia Williams /Cambridge, Mass. : 
Perseus Publishing, 2000.  Now in its third 
edition, this fully revised guide is a 
tremendously useful "one-stop" for 
questions relating to breast cancer.  
Grounded in Western science and research, 
it is also highly readable. There are 
extensive resources listed in the appendix.  
Mayo Clinic heart book : the ultimate 
guide to heart health / Bernard  J. Gersh, 
editor in chief / New York : W. Morrow, 
2000.  Attractively illustrated, filled with 
?healthy heart tips? and information on a 
wide variety of heart diseases, including 
chapters covering common tests, emergency 
situations, and cardiac surgery, this book, 
now in its second edition, is completely 
revised and expanded.

Second opinion : the Columbia 
Presbyterian guide to surgery / Eric A. 
Rose / New York : St. Martin's Press, 2000.
How to go about getting a second opinion; 
what questions to ask; how to get ready for 
surgery; and a brief guide to some common 
surgical procedures, are all presented in a 
matter-of-fact style.

We're here to help you!  Please don't hesitate 
to contact us for assistance.



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CHRC Contact Information

Tel: 1-877-MEDI-REF (1-877-633-4733)
 or    617-726-8600

Fax: 617-726-6784

E-mail:    
    treadwellqanda@partners.org 
or treadwellqanda@partners.org

Consumer Health Reference Center
Treadwell Library 
Bartlett Hall Extension 1 
Massachusetts General Hospital 
Boston, MA 02114. 

http://www.mgh.harvard.edu/library/chrcindex.html

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