When Gilles Frydman’s wife
was diagnosed with breast cancer five years ago, he immediately turned to the
Internet to learn more about breast cancer, but found it difficult to locate
and organize what information was available. This experience impressed upon him
the need for Internet resources about cancer and he vowed to change the
situation both for his family and for others.
Gilles’ vision grew into
ACOR (Association of Cancer Online Resources), a comprehensive group of
websites and communities that currently boasts nearly 56,000 registered users
and close to two million messages a week from patients and caregivers seeking
advice, support and timely and accurate information.
Patients who use ACOR register with one
or more of 110 specialized areas -- known as “lists” -- that most directly
meets their needs. These lists are
managed by “list owners” who monitor the dialogue and try to ensure that the
lists are productive for all users by maintaining medically accurate and
focused information. Patients can participate
in either the dialogue by posting e-mails on the site or opt to just listen in
on the conversation. Users also can opt
to receive every e-mail as it is posted or a digest of the day’s discussion at
the end of each day.
Patients participating in the ACOR lists
have noted that they have developed close relationships with other patients
using the lists, and that the exchange of information about treatments is very
helpful.
“We
take new patients under our wing and try to help them deal with the reality of
their disease,” says Elaine Kemp, a cancer patient who has been living with
metastatic Hodgkin’s disease for the past 17 years. “ACOR helps you get comfortable with your disease and enables you
to get on with your life. As a result,
you can live with the present and hope for the future.”
Patients agree that the real value of the
ACOR sites is that the dialogue on each list is very specific to individual
types of cancer. Breast cancer
patients, for example, have very different concerns and interests from those
with prostate cancer. Those with
metastatic disease may
choose to join a list called “Club Mets,” to find out what they need to know at
this stage of their disease. For many
patients with rare types of cancer, finding other patients with the same
disease and information on clinical trials has proven to be a lifeline to
survival.
Healthcare professionals visiting the ACOR sites note that the discussions taking place on ACOR are invaluable and the unbiased exchange of information provides patients and caregivers an important forum to educate themselves.
To further enhance the value of its Web sites, ACOR recently developed
a new site dedicated to cancer pain, www.cancer-pain.org, funded by an
unrestricted educational grant from Cephalon, Inc.
“There is always a way to alleviate pain; however, most
cancer patients do not receive adequate cancer pain treatment,” notes Mr.
Frydman. “We created Cancer-pain.org to
help educate and motivate patients to better understand cancer pain and seek
effective treatments.”
Developed under the auspices of a medical advisory board,
Cancer-pain.org aims to fill the information void on the Internet by providing
patients and caregivers with accurate information and support needed to manage
cancer pain. Cancer-pain.org features sections about the causes of cancer pain,
breakthrough cancer pain, pain treatment options, quality-of-life issues, as
well as tools to help patients communicate effectively with healthcare
providers about cancer pain. Cancer
patients also can exchange information with other patients about cancer pain.
In the near future, ACOR will add a
dedicated section on treating cancer pain for health care professionals, where
they can exchange experiences in private and learn from each other about the
latest cancer pain therapies, including the newest and most experimental, such
as those for breakthrough cancer pain. ACOR has final editorial control over
all content on the site and has appointed a medical advisory board for the
Cancer-pain.org site to ensure medical balance and accuracy.
# # #
Patients on ACOR agree
that
the real value of the sites is that the dialogue on each list is very
specific
to individual types of cancer.
Breast
cancer patients, for example, have very different concerns and interests
from
those with prostate cancer. Those
with
metastatic disease may choose to join a list called “Club Mets”, to find out
what they need to know at this stage of their disease. To many patients with a rare type of
cancer,
finding other patients with the same disease and information on clinical
trials
has proven a lifeline to survival.
Physicians who have viewed ACOR are impressed with the high caliber of online discussion that takes place and its freedom from commercial interests. “These are not “chat rooms”, these are places where serious journal articles are discussed. Many physicians could learn from the dialogue,” notes one physician-observer of ACOR.
To further enhance the value of its websites ACOR has recently developed a new cancer pain site for patients and caregivers, funded by an unrestricted educational grant from Anesta Corp. Anesta developed and markets Actiq, the first and only product clinically proven and cleared by FDA for the treatment of breakthrough cancer pain. “The ACOR Advisory Board has final editorial control over all contents on the site and we have appointed a Medical Advisory Board for the pain site to ensure me