This week in New York City, 6 breast cancer survivors and 11 female designers will come together to share their stories and explore how better design can improve the breast cancer experience – from mammography screening through the entire patient experience. GE and several health and design partners are sponsoring the three-week event in Soho, where a full slate of presentations, brainstorming sessions and exhibitions is planned. Join the conversation here and come to the design installation launch this Saturday, October 8th, from Noon to 5 p.m. (382 West Broadway in Manhattan).
The Txchnologist, the online magazine on emerging tech sponsored by GE, recently explored another way in which people in the cancer community are coming together—online in dedicated social networks. Check it out:
It used to be that chronic diseases like cancer left sufferers isolated. Now, it seems the inverse is true: as Internet access becomes ubiquitous, people with diseases are finding communities of patients who share the same diagnoses and act as a sounding board for treatment options, doctor referrals and life’s challenges.
Pew Research Center’s Internet & American Life Project research shows that one in five adult Internet users have gone online to find other people with similar health conditions. About one-quarter of people with chronic conditions has gone online, increasingly to sites such as I Had Cancer, Stupid Cancer and one of the original online resources, the Association of Cancer Online Resources.
Susannah Fox, the associate director of digital strategy at Pew, has described the phenomenon as “peer-to-peer healthcare.” This is not, mind you, health care that replaces doctors. Instead, it helps people with questions they feel are too minute to ask their oncologists and nurses: what’s the best way to shave my head during chemotherapy? What’s the best way to arrange my pillows?
And though there are burgeoning social media communities, peer-to-peer healthcare takes place most often via email. “Older users, people who are most likely to have cancer, they’re most likely to feel comfortable using email,” Fox said. “The original social media was email.”
“High value” conversations
New Yorker Gilles Frydman started the site the Association of Cancer Online Resources (ACOR) in 1995 after his wife received a breast cancer diagnosis. There were, by Frydman’s count, only a handful of cancer listservs at the time but he was still able to learn enough online to know that his wife’s doctor had proposed a treatment that was far too aggressive for her early stage disease.
Frydman said that when he questioned the treatment plan, his wife’s doctor fired her as a patient.
That exchange established a template that ACOR follows today: Frydman and ACOR’s users, who number about 750,000, including 65,000 members, want to make sure that diagnoses and treatments are based on science. Members of the group help each other find the best doctors and hospitals, they don’t try to be physicians themselves, Frydman said.
To read more, check out the full article at the Txchnologist.