CHRC News

Vol. 2, No. 1, October 1999










CHRC Annual Report

The first year of the Consumer Health 
Reference Center has been an exciting and 
busy one.  During this time 247 libraries 
asked 555 questions.   The Northeast, 
Southeastern  and Metrowest regions 
accounted for 73% of those 555 questions 
and 73% of all queries came from public 
libraries.  Aside from questions about 
CHRC services and policies, which were 
to be expected from such a new service, 
the top three topics of enquiry were cancer 
and cancer treatments, drugs and 
medications, and recommendations for 
health related books, journals and internet 
sites.  

We at Treadwell have thoroughly enjoyed 
answering (or trying to answer in some 
cases!) the questions you have referred to 
us.  We noticed the questions became more 
and more complex as the year progressed 
and we look forward to an even busier year 
ahead.

CHRC Rolodex Cards

Accompanying this issue of the CHRC 
News is a Rolodex card with full details on 
how to contact the CHRC.  We encourage 
you to put this card with all your other 
reference contacts.  We know how easy it 
is to forget the number and the name 
unless you use us all the time ? we hope 
this helps a little.

New Look for CHRC Web Page

The CHRC web page at: 
http://www.mgh.harvard.edu/library/chrcin
dex.html 
has been completely redesigned.  Please 
take a look and send us your comments.  
New features include a web form so you 
can send questions to us via the web, a 
search engine and many updated links.  
Some new links of interest include:

Needy Meds 
http://www.needymeds.com/
A listing of pharmaceutical companies 
drug offering assistance programs for 
people who can?t afford the drugs they 
need. 

School Nurse and Practitioner Links
http://www.hsls.pitt.edu/outreach/partners/
nurse.html
School librarians may find this annotated 
list of links for school nurses very useful.

New England Regional Genetics Group
http://acadia.net/nergg
Educational materials and resources on 
genetics and genetic programs in New 
England.

Several language resources have also been 
added. Two worth checking out are:

Multicultural Health Communications 
Services (New South Wales, Australia)
http://mhcs.health.nsw.gov.au/health-
public-affairs/mhcs/index.html
Extensive listing of publications in 
numerous languages.  Publications may be 
viewed and printed without any language 
software although Adobe Acrobat is 
required for viewing.

Translated Health Education Materials 
(British Columbia  Ministry of Health, the 
Department of Canadian Heritage, the 
Vancouver Foundation)
http://www.healthtrans.org
Extensive list of publications in many 
different languages.  Searchable by 
categories, agencies and languages.

Massachusetts Models

In the fourth article in our series, 
Massachusetts Models, Susan Flannery, 
Director of the Cambridge Public Library 
describes the role of the public library in 
providing health information.  This is the 
text of a presentation made to the 
Massachusetts Health Sciences Libraries 
Network (MaHSLIN) Annual Meeting in 
April 1999.
In the past 20 years the role of the patient 
in health care has evolved from recipient to 
partner.  The doctor is no longer God and 
the patient can no longer be passive.
  
The public library has a critical part to play 
in supporting individuals in their role as 
health care consumers.   This function is 
not incompatible with the traditional role 
of the public library as an information 
source but it does present some unique 
challenges.

There is a natural tension in many areas of 
reference service between advice vs. 
information, credible versus unvalidated 
sources, and intellectual freedom versus 
censorship.  But nowhere is it more acute 
than in the field of medicine.  Here we are 
frequently talking about life and death.

There are multiple reasons why an 
individual might seek out health 
information in a public library.  These 
include, but are not limited to:
? Educational research
? Healthy lifestyle/prevention
? Informed decision making
? Crisis intervention
	
The data on clientele using health 
information at the Cambridge Public 
Library is not inconsistent with national 
findings.  The majority of our users are 
students doing research and adults seeking 
personal health information.  We do 
occasionally serve nursing students and 
practicing nurses.  We do not, as a general 
rule, serve physicians and other medical 
professionals seeking health information.

Students? requests are straightforward and 
easily handled.  The adults come in three 
different categories:

1. Those seeking a healthier life style.  
They are interested in prevention of 
major illness; weight loss, lowering 
cholesterol, having a healthy 
pregnancy, how to stop smoking, etc.

2. Those who want to be forewarned and 
forearmed.   They have been diagnosed 
with a particular disease, problem 
and/or are scheduled for tests, 
procedures, or surgery which they don?t 
know anything about.  For example, a 
young woman came into the Reference 
Room of the Cambridge Public Library 
and asked the reference librarian for 
information on Down?s Syndrome.  She 
had no idea what it was but had been 
told by her physician that the baby she 
was carrying would have it.  When the 
librarian suggested that she might wish 
to discuss this further with her doctor, 
the woman made it clear that, for 
whatever reason, her doctor was not a 
potential source of information for her.
	
3. Patients in crisis/shock.  They have 
received devastating news and are 
looking for a glimmer of hope that there 
is a cure. For example, a woman came 
to the reference desk looking for new 
?cures? for esophageal cancer.  She 
made it clear that her doctor had told 
her that her case was terminal but she 
was determined to find out about a cure.  
She wanted something new and cutting 
edge? something that worked but was 
overlooked by ?traditional? medicine.

Individuals frequently come to the public 
library when they or their loved ones are 
given a grim prognosis and they are 
desperate to find ?good news? on the 
shelves or in the computer.
Imagine the challenges for a reference 
librarian in answering that question.  The 
staff finds this work intensely personal and 
very draining.  Surely, this is not the role 
that any of us envisioned when we signed 
on to be librarians.

In all instances, we expect our staff to treat 
our customers in a professional, respectful 
manner.  But clearly these situations 
require much more.  They necessitate 
sensitivity, tact, patience, empathy, and 
kindness.  The librarian needs to answer 
the questions but how he or she does it is 
crucial.  Imagine the sophistication level of 
someone who does not know what Down?s 
Syndrome is.

This illustrates another of our challenges, 
namely the disparity in our constituency?s 
levels of understanding of health 
information.  There is no common 
denominator.  Some of our users may have 
advanced degrees in the sciences and 
others may have less than a high school 
diploma and others, like myself, fall 
somewhere in between

This issue is most acute in accessing fast 
breaking medical information, which is 
most likely to be published for the 
?professional? and not for the lay person.  
Is information that one can?t understand of 
any more use than no information at all?  
Does the reference librarian make this call 
when a patron does not have the luxury of 
waiting for the ?pop? version?
 
A report published by the National 
Commission on Orphan Diseases (U.S. 
Dept. of Health & Human Services, 1989) 
describes the difficulty patients diagnosed 
with orphan (rare) diseases have in 
obtaining information to assist them in 
making decisions.  This problem was not 
limited to patients.  Nearly half of the 247 
physicians could not find printed material 
for their patients and more than one third 
could not find information summarizing 
ongoing research. (1) 

If the ?specialists? can?t find this 
information, what chance do we 
?generalists? have?  Many times we do the 
best we can in an ?alien? universe.

There is a natural tension in the medical 
field between what are accepted 
procedures and treatments, and emerging 
research and alternative therapies.  While a 
medical practitioner or institution might 
choose to follow a particular school of 
thought, it has been the public library?s 
hallmark to leave the decision making up 
to the user.  Therefore one might expect to 
find books, journals, etc. that an MD or 
RN would find medically unsound.  Fad 
diet books are an obvious example of this.  
But so are publications that claim you can 
determine the gender of your child by your 
diet or that you can cure a life threatening 
illness by eating sunflower seeds.
Although it is essential that a public library 
provide access to mainstream medical 
information it is also our responsibility to 
provide information on alternative medical 
practices and ideas.  Even if we hadn?t 
considered that our mission in the past, the 
explosion of medical information, both 
bogus and bona fide, on the Internet has 
made it impossible for us to do anything 
else.

As professionals, we do not eschew our 
obligation to provide accurate information 
to our customers by leading them to the 
very best medical information available - if 
that is what they request.  One way we 
assist our users in ferreting out the ?good 
stuff? is by producing guides.   

We have expanded our guides beyond the 
traditional book resources to include useful 
web sites with credible and up-to-date 
information on a variety of subjects.

That in no way suggests that we would 
actively lead a patron away from his or her 
desire to access non-traditional resources, 
un-moderated listservs, and chat rooms.   

The revolutions in technology, the 
availability of shared access to electronic 
databases, the establishment of the 
Consumer Health Reference Center at 
Treadwell Library, MGH, and the Internet 
has greatly enhanced the health 
information resources of even the smallest 
library in the Commonwealth.  

In 1999, the Cambridge Public Library has 
access to nearly 200 full-text medical or 
health journals on-line.  Ten years ago I 
would have been surprised if we had more 
than five titles in our collection.

Public libraries are proud to be partners 
with medical professionals and patients in 
de-mystifying medicine and making it 
accessible to the lay person.  In fulfilling 
that mission we accept our unique role 
which we hope bridges the ?medical gap?.
	
1. The Status of health information delivery in the U.S.: 
the role of libraries in the complex health care 
environment.  Karen Hackleman Dahlen.  Library 
Trends. Summer 1993).

Susan Flannery, Director Cambridge Public 
Library.

Gale Encyclopedia of Medicine 
Online via Health Reference 
Center
Detroit: Gale Research, 1999.  $500

The excellent Gale Encyclopedia of 
Medicine is now available in full text as 
part of the Searchbank Health 
Reference Center database.

This five-volume set has proven itself a 
consistently reliable, useful, and quick way 
to answer a number of CHRC questions.  
Arranged in alphabetic order it is a ?one-
stop source for medical information on 
nearly 1,500 common medical disorders, 
conditions, tests and treatments [?]?  
which ?uses language that laypersons can 
understand?.  Each article follows a 
standardized format.  For instance, the 
entry on Ascites (an abnormal 
accumulation of fluid in the abdomen) 
contains definition, description, causes and 
symptoms, diagnosis, treatments (both 
conventional and alternative), prognosis, 
and prevention.  There is a box for key 
terms; a black-and-white radiographic 
image; and a brief bibliography of books, 
journal and popular articles, and contact 
information, including URL, for the 
American Liver Foundation.

Free Merck Manuals 

From the Merck website: 
http://www.merck.com/pubs/

?We are delighted to make the 17th edition 
of The Merck Manual available on our web 
site free of charge. This book--The 
Centennial Edition--was published in 
April 1999.  Merck also provides the 
entire 2nd edition (1995) of The Merck 
Manual of Geriatrics and part of The 
Merck Manual of Medical Information--
Home Edition (1997) available on our web 
site free as well. Please use them as often 
as you like?.

Catchy Drug Names and 
Reference Questions

?I heard about a great new arthritis drug - 
something like Celeron, or Acela, or 
Celebrex, or maybe Celebra.  Can you give 
me some more information??  Though ad 
execs on Madison Avenue may delight in 
finding catchy brand names for new 
products, the similarity in sounds can 
cause problems. Celeron ? is an Intel ? 
processor which ?expands Intel processing 
performance? ; Acela is an ?ultramodern, 
high-speed train? which will go into 
service on the Northeast Corridor later this 
year; Celebrex is the FDA approved drug 
for treatment of rheumatoid arthritis and 
osteoarthritis.  

Using the FDA web page search feature 
http://www.fda.gov/search.html
and limiting your search to  the ?Press 
Release? section of the FDA website 
instead of the default ?Search All of FDA? 
is a quick and easy way to find out about 
new drugs.   Doing this pulls up one brief, 
easy-to-read information sheet about 
Celebrex.

And what about Celebra?  Is it that Disney-
owned town in Florida?  (No, that?s 
Celebration).  Celebra ?  is the name 
under which Celebrex is marketed in 
Brazil.  The ?Doctor?s Guide to New 
Drugs or Indications?,
http://www.pslgroup.com/NEWDRUGS.HTM 
is another comprehensive source of 
information about drugs.  Utilize the ?find? 
function of your browser to locate the 
word you?re looking for.  In this case, the 
title of the news release is ?COX-2 
Inhibitor, Celebra, Approved in Brazil for 
Arthritis Treatment?.
Treadwell EJournals in the 
News

The ?New on the Net? column in the May, 
1999 issue of Medicine on the Net includes 
recognition of Treadwell?s electronic 
publications.  They say that we present an 
?invaluable list of sites offering full-text 
articles or abstracts and tables of 
contents.?  Though most of these sites do 
require an MGH Internet address for 
access, some are freely available. One of 
those which may be useful to consumers, 
given that cancer and cancer treatments 
was the number one topic of questions 
referred to the CHRC, is the M. D. 
Anderson OncoLog.  This publication of 
the University of Texas? M. D. Anderson 
Cancer Center, ?reports recent 
developments in cancer patient care, 
significant diagnostic progress, and current 
clinical and basic science research 
activities at M. D. Anderson Cancer 
Center.? Articles date back to the 
beginning of 1996, and there are between 
three and eight articles per issue. Web 
addresses:
http://www.mgh.harvard.edu/library/electron.htm
http://www.mdacc.tmc.edu/~oncolog



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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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