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CHRC News
Vol.2, No. 3, April 2000
INTRODUCTION
Welcome to the first spring of the new
millennium, and a new focus for the CHRC
News. Each issue will highlight quality
consumer health information on the web.
This issue will be devoted to a broad over-
view of cancer, spotlighting just a few
excellent web sites. Topics in upcoming
issues will focus on exploring queries that
the CHRC has received. Please let us know
what topics you?d like to see covered.
JOINT CHRC/SLRS
WORKSHOPS
We hope the good weather will enable you
to attend one of the upcoming CHRC/SLRS
workshops listed below. In May, the
Massachusetts Board of Library Com-
missioners (MBLC) will be sponsoring
workshops covering services offered by the
CHRC and the Statewide Legal Reference
Services (SLRS). Based on some of the
more unusual and thought-provoking
queries received over the past year, the
workshops will provide specialized
information on print and electronic resources
that may be best utilized to help answer your
users? queries. These refresher workshops
will allow an opportunity for input into
future services that may be provided by
these statewide reference programs. Library
staff from any regional member library are
welcome to attend on the date and location
that is most convenient, regardless of which
region your library belongs to.
WMRLS:
Mon., May 15, 1:00 p.m.?5:00 p.m.
Western Region HQ
58 Main Street
Hatfield
1-800-282-7755
Please do not pre-register for this location.
NMRLS:
Tues., May 16, 12:30 p.m.?4:30 p.m.
Lucius Beebe Memorial Library
Main Street
Wakefield
781-246-6334
contact: Susan Grabski
sgrabski@nmrls.org
CMRLS:
Wed., May 17, 9:00 a.m.-1:00 p.m.
Central Region HQ
8 Flagg Road
Shrewsbury
508-757-4110
contact: Margaret Cardello
mcardell@cwmarsmail.cwmars.org
SEMLS:
Thurs., May 18, 12:30 p.m.? 4:30 p.m.
Middleborough Public Library
102 North Main Street
Middleborough
508-946-2470
contact: Cheryl Bryan
cbryan@semls.org
MMRLS:
Fri., May 19, 9:00 a.m. ? 1:00 p.m.
Metrowest HQ
135 Beaver Street
Waltham
781-398-1819
contact: Barbara Andrews
andrews2@mmrls.org
CHRC@MLA
Kate Kelly, CHRC Project Manager, looks
forward to meeting many of you on Friday,
April 28, at her 2:45 p.m. presentation,
?Consumer Health Reference? during the
Massachusetts Library Association meeting
at the Sheraton Hyannis. She will be
focusing on electronic resources for
consumer health services, with a brief
introduction to collection development.
TREADWELL LIBRARY
RECEIVES NLM GRANT
We are pleased to announce that a joint
proposal submitted by Treadwell Library
and the Massachusetts General Hospital
Community Health Associates was one of 49
electronic health information projects funded
by the National Library of Medicine. This
project will create a Health Resource Center,
based in Revere that will serve Chelsea,
Charlestown, Everett and Revere, and will
provide online access to health care
information. MGH librarians and resource
specialists from the Mass. Prevention Center
in Boston will train outreach workers and
other staff from the MGH Community
Health Centers to assist local residents,
community health care workers, and local
organizations in accessing online health
information via the Internet. Another
partner in the project is Chelsea?s
Department of Public Health. For more
information, go to:
http://www.nlm.nih.gov/news/press_releases
/ehip.html (NLM Press Release), and
http://www.nlm.nih.gov/nno/hipprojects.htm
l (Health Information for Public Projects)
CANCER ON THE WEB
Many articles have been written about the
problems inherent in finding quality medical
literature on the web. As an article entitled
?Cancer and the Internet? by Donald Earl
Henson, M. D., in the August 1, 1999 issue
of the journal Cancer stated, ?On the
Internet, there is no separation of peer-
reviewed, scientfically proven conclusions
from anecdotal information or personal
reflections.? Another article in the same
issue, ?Evaluation of Cancer Information on
the Internet? by J. Sybil Biermann, M. D., et
al., highlighted the pitfalls of using search
engines to look for information about
cancer. The example chosen was Ewing
sarcoma. Its variant spellings -- Ewing,
Ewings, or Ewing?s ? resulted in a plethora
of possible sites, some of which offered
blatant misinformation, and others of which
only mentioned the diagnosis in passing.
The following web sites will help provide
consumers with quality information about
cancer.
OncoLink
http://cancer.med.upenn.edu
There are a number of contenders for ?best
cancer site.? Arguably the most all-
encompassing, professionally written, yet
accessible to the general public site is the
University of Pennsylvania?s OncoLink.
According to their home page, OncoLink
was founded in 1994 to help cancer patients,
families, health care professionals and the
general public find accurate cancer-related
information at no charge. It is updated every
day, and is designed to make it easy for the
general public to navigate through the pages.
OncoLink provides comprehensive
information about specific types of cancer,
updates on cancer treatments and news
about research advances.
There is a wealth of information, but don?t
let yourself be intimidated. On the home
page, you can connect to Disease Oriented
Menus (written for the professional and the
lay reader, in both English and Spanish);
Medical Specialty Oriented Menus (for
instance, radiation oncology or bone marrow
transplantation); Psychosocial Support and
Personal Experience (ways to cope; shared
experiences); Cancer Causes, Screening,
and Prevention (environmental, genetic,
tobacco issues); Clinical Trials (with links
to a variety of trials at governmental,
organizational, and medical center sites);
Financial Issues for Patients (billing,
assistance programs); and more. Also on its
home page, OncoLink provides a link to
book reviews on sixteen topics (to date),
ranging from skin cancer to nutrition. Under
each topic, there are a half dozen or more
substantive book and media reviews written
by physicians and health care professionals.
OncoLink will also highlight those books
containing irresponsible advice which they
do not recommend.
Another way to find information in
OncoLink is by taking advantage of their
search engine, AltaVista. Using the
advanced mode, you can search either the
entire OncoLink database or restrict to
various areas, which consist of Frequently
Asked Questions or FAQ (answered by
OncoLink staff, usually a physician or
nurse); Cancer News, Psychosocial
Information, Citations from the National
Library of Medicine?s CancerLit, or All
Areas Except Citations. The Advanced
Mode is recommended because Boolean
operators AND, OR, and NEAR can be
used to good advantage. As an example, try
looking for information about pain as it
relates to non-Hodgkin?s lymphoma. (There
are many different kinds of lymphoma, the
type being determined by how the cells look
microscopically.) Translate the search into a
statement like this: pain near non-
Hodgkin?s lymphoma. The advanced
search mode in All Areas Except Citations
yields (to date) five hits, some of which lead
to more documents. It should be noted that
there are no results when it is spelled
without the apostrophe or without the
hyphen. Most notably, there are two FAQs
about pain in non-Hodgkin?s lymphoma, and
there is a ?Primary Document? on pain
management, that links to a wide variety of
carefully chosen organizational and medical
center resources.
ASCO
http://www.asco.org
Worthy of brief mention is the site of the
American Society of Clinical Oncology
(ASCO), whose mission, according to their
home page, is to promote the ?exchange of
cancer-related information and news among
the oncology community as well as the
general public.? ASCO?s annual meeting is
?the premier event in oncology, with leading
specialists from around the world presenting
the most recent advances in cancer
prevention, treatment and research.? The
ASCO site has just begun to make itself
more accessible to the consumer, and by
going to the ASCO Shortcuts drop-down
menu, and searching by disease, you can see
breast, lung, prostate and colon cancers
listed. For each disease, links are available
to guidelines, resources, news, clinical
research, and other categories. This site
will clearly be expanded and it appears as if
it will eventually become a very useful site
for consumers.
Lung Cancer
http://lungcanceronline.org
There are a number of very high quality web
sites devoted to cancer in specific parts of
the body. Lung Cancer Online is one such
site. It was founded by a librarian and lung
cancer survivor, Karen Parles. Coinciden-
tally, this site can be used to illustrate all the
virtues that you hope to find in a quality web
site, ranging from currency and reliability of
source information to statement of
ownership. It loads very quickly, and there
are no frames or graphics to clutter the
screen. Lung Cancer Online provides links
to such important and technical sites as the
University of Iowa?s Virtual Hospital,
http://www.vh.org, for instance, which
describes in extensive clinical detail a wide
variety of both common and rare tumors of
the lung. Lung Cancer Online also links to
easily understood sources such at the
National Cancer Institute?s What You Need
to Know About Lung Cancer, a booklet
which includes line drawings and
definitions, http://cancernet.nci.nih.gov.
Breast Cancer
http://www.cancernetwork.com/guidelines/B
reast/Page1.htm
There are a number of highly reputable sites
for breast cancer information. One such site
is a collaboration between the National
Comprehensive Cancer Network (NCCN)
and the American Cancer Society (ACS). .
According to the site?s home page, this
partnership is meant to ?provide patients and
the general public with state-of-the-art
cancer treatment information in
understandable language. This information,
based on the NCCN?s Clinical Practice
Guidelines, is intended to assist you in the
dialog with your physician.? The
outstanding feature of this site is the
Decision Tree section. Click on Stage 0
(LCIS, lobular carcinoma-in-situ), Stage 0
(DCIS, ductal carcinoma-in-situ), Stage I
and II, Stage III, Follow-up/Recurrence, or
Stage IV. You?ll be led, in logical
progression, through a chain of ?interactive
flow charts,? as they?re described, that
represent different stages of breast cancer.
Each decision tree shows how the patient
and physician, working together, arrive at
the choices needed to make a surgical,
radiation, chemotherapeutic, or other,
decision. Every term is clearly defined. It
should be noted that male breast cancer is an
entirely different disease from female breast
cancer, and it is not covered in this web site.
Prostate Cancer
http://www.cancer.org/m2m/m2m.html
Prostate cancer is the second leading cause
of cancer death in men, but by comparison
with breast cancer, there are fewer quality
web sites on the subject. However, the
American Cancer Society?s Man to Man:
Prostate Cancer Patient Education and
Support is a great starting place. The Man
to Man concept began ten years ago in
Florida with a prostate cancer survivor,
James Mullen, who began a support group.
Patient education materials are available at
this site, covering topics from the PSA blood
test to postoperative incontinence
management; risk factors; links to other
prostate cancer sites, and eleven (to date)
issues of the Man to Man Newsletter, a
quarterly electronic newsletter covering
scientific topics in a readable way. The
current issue?s headlines include
?Finasteride may not prevent prostate
cancer?; ?Family history of breast cancer
may increase risk of fatal prostate cancer?;
?Focus on clinical trials? and ?You may
have heard about shark cartilage.?
One link from this site, PSA Rising, was
particularly impressive in content, if not in
layout. A pilot project in prostate cancer
outreach sponsored by a Fort Lauderdale
cancer foundation, at http://www.psa-
rising.com, this site is notable for a broad
range of scientific news about new prostate
cancer treatment. PSA Rising also links to
news releases from pharmaceutical
companies, as well as a wide range of
treatment options. The goals of PSA Rising
are clearly stated on their home page, and
include, among others, alerting ?the
medically underserved, especially African-
American men,? helping those newly
diagnosed gather information, and
conveying news about clinical trials and
medical research. The site has a search
engine, and there is a prominent link to a
Spanish language publication about prostate
cancer from the American Cancer Society.
It should be noted that other sites, like
OncoLink, provide information in Spanish
as well.
Brain Tumors
http://www.virtualtrials.com
Though there are many extremely useful
brain tumor sites sponsored by organizations
and medical centers, offering news, support,
glossaries, and treatment information, one of
the most comprehensive and easily
navigated is The Musella Foundation for
Brain Tumor Research and Information.
A 501(c)3 non-profit organization
?dedicated to improving the quality of life
and survival times for brain tumor patients,?
according to its home page, the site began in
1993. The site?s Medical Advisory Board
members (physicians from the New York-
New Jersey area) are prominently listed, as
are disclaimers. Although the ever-changing
advertising banners (mostly from drug
companies and medical institutions) can be
distracting, the quality of information is
superb and is updated constantly. Some of
the most useful topics covered include How
to Find Brain Tumor Treatment (browse
new listings or browse by brain tumor type)
and Learn about Treatments for Brain
Tumors (news stories, conference
information, survivor stories, glossary).
There are also listings of support groups,
contact information for specialists and
hospitals (though this section is not
comprehensive) and links to other brain
tumor sites. One feature which
demonstrates the power of this site is the
Search for a Specific Brain Tumor Trial
or Treatment in the advanced search mode,
which allows you to specify the following
from drop-down menus: tumor type;
treatment type; clinical trial phase; age
group; and geographic location. If you
chose to look for chemotherapy trials of
glioblastoma multiforme in Massachusetts,
you?ll find six. The trials are listed by name,
and clicking on ?Details? for the ?Phase I
Dose Escalation Study of Gliadel in Adults
with Recurrent Malignant Gliomas? informs
you that this is a study for adults only who
can care for most of their own needs. It
mentions other types of tumors, other than
glioblastoma multiforme, that this trial will
consider, and gives complete contact
information. In this case, the trial takes
place at the Brain Tumor Center at MGH.
Though finding quality, current cancer
information on the web can be challenging,
it is also rewarding to both librarian and
consumer. As always, please don?t hesitate
to contact us with any questions you may
have.
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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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