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A visit to Colontown shows potential of online patient communities

A visit to Colontown shows potential of online patient communities

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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.]

Comments

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Colontown has made me not feel alone. I have always found comfort anytime I have needed it , sometimes just reading others post and knowing that someone else is feeling the same way is all you need. I have made beautiful friendships too, I am so greatful for Colontown

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Hi,
Had to happen sooner or later. Just released the app for Social Support for those with chronic conditions. Easy to use, the app concentrates on 6 major diseases right now. Those are Cancer, Heart Disease, Diabetes, Mental Illness, Substance Abuse and Death. Have a look at www.Reachout.life

Thanks

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Do u no of any such group, have searched a lot and can't find any that meets the information I'm seeking
Thanks
Bill

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In April I had abdominal pain, went for Colonoscope diagnosis Stage 4.Now it has been 8 months. In November I had a Large tumor removed. Now facing Chemo Treatment again. Never knew till tonight about Colontown till tonight. Glad I found the site.

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Had my colon rupture and part of it taken out. Have lots of polyps and been suggested to the surgeon that as much of my colon as possible be taken out. Doing cancer DNA 1/31/2017 before deciding whether to take out just the right side of the colon or all of it.

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I have fourth stage colon cancer and need to find out more about what this organization does.

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I have a cousin who has stage 4 colon cancer and is in her fourth year since diagnosis and raves about the support she gets from Colontown. I want to donate some money for support of your work, BUT prefer to send a check rather than use a credit card. Please send me an address, so I can do this. I understand your wishes regarding privacy. Thanks for all you do. Prayers for all.

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