01 May Cancer Connect – Online Support & Networking for Cancer Patients
Social networking sites are rapidly growing, giving patients with cancer a place to connect with others. On line social groups on Facebook, discussion boards, and peer to peer networking connections have become widely available and serve some specific needs unique to cancer patients and their caregivers. In fact many leading cancer centers now offer social communities as part of their overall patient support program.
Despite being an oncologist, when my son was diagnosed with a rare sarcoma several years ago I experienced the same range of emotions known to anyone ever impacted by a diagnosis of cancer. Fear, anxiety, trepidation about what to do next, and isolation all accompany a new diagnosis of cancer. Living in a very small town with a rare cancer, my son and our family felt even more isolated. As our family faced this illness my son and his brother observed one day “how great it might be if there were a dedicated on line community just for cancer patients”. Cancer Connect was born….
CancerConnect is the oldest dedicated community designed specifically for cancer patients and their caregivers. Since its launch in 2010 thousands have joined to learn about cancer, share information, and find hope, support, and inspiration from fellow members impacted by a diagnosis of cancer. CancerConnect has developed a reputable online environment and has several unique aspects compared to other online groups: CancerConnect is
- Comprised of over 60 individual cancer groups and supportive care communities.
- Confidential, safe, secure, and never shares patient information.
- Fully moderated by Cancer Navigators to facilitate access to information and provide support.
- Allows no advertising or marketing.
- Is Both Local and Universal
Being both local and universal is perhaps the most unique aspect of the community. CancerConnect is used by cancer centers and advocacy groups to create virtual support groups and provide their members with local information and resources. Once patients join a ‘disease community,’ however they can connect with patients sharing on a national level. A Georgia resident with a rare cancer can connect with a person being treated at Harvard-Dana Farber they can share experiences and learn from each other. This is key because patients want to learn about other treatment options and programs as well as validate what they are experiencing and being offered locally.
Cancer Connect is used by many of the major leaders in cancer care including Memorial Sloan-Kettering Cancer Center, Roswell Park Cancer Institute, the Dana-Farber Cancer Center, Beth Israel-New England Deaconess, The James Ohio State Cancer Center, The Cancer Institute of Miami and the National Ovarian Cancer Coalition.
According to Memorial Sloan Kettering clinical social worker Christopher Anrig “CancerConnect provides their patients with a major source of reliable, health-related information and critical support, including peer-to-peer advice, which can make a huge difference in how they cope with many aspects of their cancer, for many individuals, this provides them with a resource that helps them overcome the physical and social limitations that may prevent them from getting the care and support that they need.”
Participants also appreciate that the site allows them to remain anonymous. “Anonymity provides them with a sense of safety and confidentiality that they can’t have when they’re speaking with other people directly, and alleviates some of the vulnerability that represents an obstacle to sharing their experiences and getting the help they need,” Mr. Anrig says.
By Charles Weaver MD; co-founder and editor of CancerConnect
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