New Mayo Clinic social network connects global community of esophageal cancer patients

Mayo ClinicNov 1 2011

In 2008, physicians at Mayo Clinic Florida led by Herbert Wolfsen, M.D., were looking for new ways to keep in touch with the large group of esophageal cancer patients cared for by him and other gastroenterologists and surgeons. Telephone calls, faxes and email had worked to create a network of patients but many now wanted interactive and remote access capability to share their experiences and challenges with this serious disease. Dr. Wolfsen's daughter, Christianne, working as a Mayo research assistant, thought starting an online chat group using a Facebook community might just work.

That Facebook experiment has proven to be so successful and sustainable that Dr. Wolfsen will talk about the use of social media for survivors of esophageal cancer at the annual meeting of the American College of Gastroenterology in Washington, D.C.

"This is much more than a support group," he says. "Our patients and their families are focused and devoted to educating others about their experience with the diagnosis and treatment of this cancer."

The patients in the group face unique medical issues. Most of them have undergone, or will soon have, endoscopic therapy or esophagectomy, the surgical removal of all or part of the esophagus (the food pipe) and the top of the stomach. The remaining part of the stomach is then drawn up and attached to the remaining section of esophagus. The surgery potentially leads to numerous digestive, nutritional and lifestyle concerns for patients and their care givers, such as reflux, swallowing problems, nausea, sweating, diarrhea and fatigue after eating, and chronic, severe cough and aspiration, Dr. Wolfsen says.

The Facebook community quickly became a forum where patients offered help and support to each other and their families, answering questions many physicians aren't really good at, he says.

"Physicians can talk about the technical aspects of esophageal cancer and its treatment, but we don't really know what it means to have issues with breathing, eating, sleeping, and just trying to live a normal life after cancer treatment, because we haven't had this experience," Dr. Wolfsen says.

Over time, patients recently diagnosed with Barrett's dysplasia or esophageal cancer who were contemplating their endoscopy and surgery treatment options were invited to join the group to learn from other patients who have already lived through this experience. The Facebook group site is private and is accessed by Mayo Clinic invitation only. Physicians do not offer medical advice to the group, but may individually contact their patients.

Mayo Clinic staff that treat such patients have also benefited from the group, Dr. Wolfsen says.

"We understand more about the many issues that our patients can really struggle to overcome. Many of the techniques, methods, medications, and lifestyles changes they develop to cope with them aren't in the textbooks — they are word of mouth," he says. "Nothing works the same for each person, and every patient's experience is valuable."

The patient Facebook group, run with help from Mayo Clinic volunteer patient advocate Mary Helen Duggar, was one of Mayo's original forays into social media. An organized and widespread Mayo Clinic online community has since been established. Mayo Clinic now has the most popular medical provider channel on YouTube, an active Facebook community and more than 200,000 followers on Twitter. In July, Mayo Clinic launched a new online social network to connect its global community of patients and caregivers with others who share similar interests. This network builds on previous social media platforms Mayo Clinic has created.