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Where You "Belong"

An aptly named app brings community to patients and caregivers around the world.
BY Katie Kosko
PUBLISHED November 19, 2019
A new app called Belong aims to create an at-your-fingertips community for people affected by cancer, including patients, caregivers and providers.
Belong provides educational materials, peer-to-peer support, an appointment tracker and an area to store medical documents. Users can also ask questions, which are generally answered during business hours by experts in the field. Forums cover topics such as emotional support, nutrition, pain and symptoms and radiation.

The social network has more than 200,000 users, who are put into “rooms” with people who have had similar experiences, said Daniel Saez, the treatment and trials navigator at GO2 Foundation for Lung Cancer, which has partnered with the makers of Belong.

“You’re getting a perspective from someone fighting the same disease as you are. To me, that is one of the best things. I get to share and receive from other fighters,” said Ron Simmons, an appreciative member of this new community.

Simmons initially received a stage 1 colon cancer diagnosis in 2013. He had surgery to remove the cancer and assumed his journey would end there. But in 2017, after routine blood work raised a red flag, CT and MRI scans revealed something in his left lung. However, further biopsies concluded it wasn’t cancerous, so Simmons’ doctors thought it might be a partially collapsed lung that should be watched for the next six months.

Around Christmas, Simmons felt unwell, got a chest X-ray and learned he had stage 3 non-small cell lung cancer that had spread beyond the lung. Treatment began quickly: partial removal of his lower left lobe; chemotherapy and radiation; and immunotherapy, completed in August 2019. He currently has no evidence of disease and will go for scans every three months. The 58-year-old married father of two is even back to regular exercise, including cardio to boost his fitness.

However, adjusting to life outside of the cancer center has proved challenging without the daily support of the medical team, other staff members and fellow patients, Simmons said. He plans to stay connected through visits and social media but wanted something more, and he found it through Belong. “A neighborhood is a group of people all together,” he said, “and it takes a community of people — a neighborhood — to be able to survive (cancer) and be successful.”

Many users value the sense of anonymity, Saez noted. “A lot of people like to talk about their condition but don’t want their friends, family or anyone in their proximity to know what is happening. The anonymity makes people feel that they can be more open and allows them to connect on a level that they might not otherwise be able to.” Belong is also a good resource for patients who may live in rural areas and lack easy access to support groups, he said.
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