Online peer support groups are growing and it’s easy to see why. Peer support groups offer those dealing with a difficult diagnosis such as cancer, the chance to find empowerment, support and guidance from other members who are going through a similar situation.
Inspire, which is an online patient-driven community, has grown to nearly 1.5 million members since its inception in 2005. The company has more than doubled its amount of registered users over the past three years. Of the 200 groups that can be found on the site about a third have joined one or more of the online community’s cancer support groups.
“Inspire co-founder and CEO Brian Loew wanted to create a safe, supportive community for patients to gather, and if members wanted to participate in clinical trials, then Inspire could help connect them to researchers,” said John Novack, communications director at Inspire. “We deeply believed from the start that we can accelerate medical progress, and as we’ve grown to more than one million members, we are helping to do just that.”
Online Kidney Cancer Support Community
“As a kidney cancer patient, I know how valuable emotional support can be,” said Kidney Cancer Association Vice President Bill Bro.
All in all, the Kidney Cancer Association has about 100,000 members on its social media pages in addition to its presence on Inspire.
“To my knowledge, the Kidney Cancer Association’s Inspire community and Facebook groups constitute the largest kidney cancer support network anywhere in the world. Thousands of people are ready to offer their perspectives on treatment decisions as well as offer help to caregivers,” Bro said.
According to Sara Ray, senior director of research at Inspire, peer support groups have a positive effect when it comes to patients making decisions and exploring all of their treatment options.
“The collective clinical and experiential knowledge of the peer support group helps patients not only learn which treatments are available, but what they can expect from those treatments,” said Ray. “Patients often feel those who are on the cancer journey have a ‘real-world’ understanding of treatments and are eager to learn from them. In addition, patients can learn about upcoming treatments and clinical trials. This knowledge empowers them to speak to their physician, learn more, ask better questions, and become active in treatment decisions.”
Changing the Face of Cancer Care
Essentially, patient support groups are helping change the face of cancer care. Online support communities allow patients to make informed decisions with help from their peers.
“Patients are smarter and more empowered,” Ray said. “Peer groups have become a way to crowdsource information. As ‘asking the hive’ becomes more and more popular, patients are able to use the combined knowledge and experiences of their peers to learn about new options, manage expectations, and take part in decision making.”
When it comes to the psychosocial aspect, online peer support communities offer a myriad of resources for their members.
“Inspire provides a place for patients to feel less alone or isolated by providing a place for those dealing with cancer to share their worries and concerns and receive validation, love, and support,” said Ray. “Further, Inspire provides a place where patients can brainstorm and plan, feeling empowered to make decisions. In addition, many patients and caregivers on Inspire express the desire not to burden loved ones by seeking emotional support. Inspire provides a place where patients and caregivers can express their fears, discuss their worries, or just vent in a space apart from their loved one. Often, communities have discussion channels specifically for caregivers.”
Ray also noted that with communities like Inspire, patients gain what they lack in cancer support.
“They can seek clinical information or emotional support,” she said. “If they have a rare cancer, they can find others like them. Peer support groups are not a one size fits all solution. They are just as effective for a patient who wants to check in only at times of testing and for the patient who visits the board daily to share side effect struggles. Moreover, patients gain a place to give back. Many patients enjoy ‘paying it forward’ by sharing their experiences and providing support to others.”
From a personal perspective, the Kidney Cancer Association has seen a direct impact with its patients within Inspire’s community.
“I’ve witnessed patients moving from feeling hopeless to hopeful in just a few months as the result of positive interactions with others online,” Bro said.
To join the Kidney Cancer Association’s Inspire community, go to kidneycancer.me.
A Message from Our Sponsor
As the founding sponsor of Real World Health Care, the HealthWell Foundation is committed to helping patients get the medical treatments they need, regardless of their ability to pay. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.
In keeping with our mission, we are pleased to announce the introduction of a new Cancer-Related Behavioral Health Fund, specifically for treatment-related behavioral health issues in cancer. The Fund provides financial assistance to individuals with a diagnosis of cancer to help with cost-shares (deductibles, coinsurances and copayments) for covered services rendered by behavioral health providers (psychiatrists, psychologists, clinical counselors, and licensed social workers).