A visit to Colontown shows potential of online patient communities
Is technology living up to its promise of empowering patients in new ways, beyond the ubiquitous WebMD search? Proponents of the “ePatient movement” believe so. The term refers to patients, often with complex medical conditions, who actively participate in their medical care. Such patients seek better coordination of their care and access to their health records as well as the latest treatments and technology that enable better disease monitoring. These patients are often active on social media, advising each other on where to go for a certain procedure or treatment, and blog extensively about intimate details of their health.
Virtual communities are starting to spring up, bringing ePatients together. I discovered one such community, Colontown, while attending a meeting of entrepreneurs in health care. Erika Hanson Brown, a Colorado colon cancer survivor, started the invite-only group on Facebook a few years ago after going through the stress of an initial misdiagnosis and having difficulty finding similar patients to talk to.
On Facebook, Colontown is guarded fiercely by Brown. You must essentially prove to her that you have colon cancer or care for someone who does (in order to keep out lurkers). Once done, members have access to a wildly supportive community of people. Subgroups abound for people with specific needs, like women with stage 4 colon cancer. Patients can discuss clinical trials, symptoms, doctors, colostomies, surgeries, and more. As seen here, Brown has taken a demystifying yet whimsical approach to promoting her group. Cartoons showing subgroups, like the tongue-in-cheek “Poop Group,” tell patients that Brown isn’t glossing over the realities of the disease.
Unlike breast cancer or multiple sclerosis, colon cancer can be a more isolating disease when it comes to finding similar patients. There’s a perception of colon cancer as a man’s disease, and one study found that women hold other people more personally responsible for lung cancer or colon cancer than they do breast cancer, probably because smoking or a low-fiber diet can increase risk for those cancers.
There’s also the disgust factor. As a society, we have been socialized to think bodily functions and the gut are “dirty,” coloring any disorders of that system with shame. Patients report feeling confined to their homes with diarrhea and find the disease difficult to discuss. It’s much easier to show a friend a melanoma excision scar than a colostomy bag.
Other cancer advocacy and patient navigation sites, like CancerHawk, have raved about the rich community support on Colontown. Gastroenterologists and oncologists are starting to refer their patients to Colontown along with prescribing colonoscopies and chemotherapy. And unlike other sites such as PatientsLikeMe, which seems to be more driven by prescription drug use data, Colontown focuses on friendships, support, and engagement.
Other patient forums and resource sites abound on the Internet. Overcoming MS is a UK-based independent site bringing patients with multiple sclerosis together. Rareconnect.org targets patients and families dealing with rare diseases. Cancer Support Community is one of many catchall sites where a cancer patient can find other cancer patients. Rather than just using the sites for moral support or a place to vent, patients are double-checking what their doctors tell them with patients who have been through the same experience, finding out about clinical trials for new medications before their oncologists do, and learning tips and tricks for navigating the forbidding world of deductibles and insurance approvals. With its Facebook format, though, Colontown puts faces to names, simulating the church-basement support group of yore.
Back in Colontown, Brown’s enthusiasm is infectious.
“I’m the mayor of Colontown, and we are busting this disease out of the closet.”
[Photo by sasha diamanti via Flickr.]