ASSOCIATION OF CANCER ONLINE RESOURCES

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.

ACOR Extends Service to Cancer Pain Site

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.