Online community for PNET patients now available from Inspire
By Mia Burns
Patient engagement company Inspire has announced its enlistment of industry and advocacy leaders to create a peer-to-peer support community for those affected by pancreatic neuroendocrine tumors, also known as PNET. As a free global network, The Pancreatic Neuroendocrine Tumor (PNET) Support Community allows patients and caregivers to share information and support. Group members discuss such topics as practical tips for the newly diagnosed, chemotherapy and targeted therapies, and surgical options. Novartis Pharmaceuticals Corporation is the corporate supporter of the site.
Previously, a peer-to-peer community solely for PNET patients did not exist. Inspire has partnered with six neuroendocrine tumor focused advocacy organizations to help create the online community. The nonprofit partners are: Carcinoid Cancer Awareness Network; Carcinoid Cancer Foundation; Caring for Carcinoid Foundation; New Jersey Carcinoid Cancer NETwork; North American Neuroendocrine Tumor Society; and the Pancreatic Cancer Action Network.
“The community went live in the fall, as we were finalizing our partner organizations, and our partners are now starting to promote it to their members,” says Brian Loew, co-founder and CEO of Inspire. “For our partner organizations, this community can serve as that very specific peer-to-peer resource that individually, these advocacy organizations didn’t have.”
Loew told Med Ad News that among members, Inspire is already seeing how they are connecting with each other, such as the spouses of pancreatic neuroendocrine tumor patients sharing caregiver tips with each other. “There have been well over 1,000 posts made by members already,” he says. “We look for member responses when someone who is newly diagnosed posts for the first time. We just saw in June one member write, ‘So glad to have a place to come and vent where there is real understanding.’ A comment like that encourages us because we work hard to promote that common bond in a community, and that feeling of security where someone who is in pain, or frustrated, or scared, or just worn down, can express those feelings freely.”
The site features a section titled, “Meet Others Like You.” According to Loew, it is up to the community members as to how they chose to interact.
“The members drive how they want to interact, so some may look to meet others in person, and other members would never want to do that,” he told Med Ad News. “In several of our cancer-focused support communities, members on their own organize annual social events, and some cancer survivors plan their vacations around those get-togethers. These aren’t events arranged by Inspire or any patient advocacy organization. In the PNET community, we envision some members looking to connect with others who live nearby, probably for the purpose of sharing information about physicians and hospitals. The rarer the disease, of course, the more difficult it is to find trusted specialty care. In May there was a discussion about PNET specialists for patients living in the Pittsburgh area, for instance.”
Inspire Launches Online Community to Connect Patients Affected by Pancreatic Neuroendocrine Tumors (PNET)