Cancer Support Community: How a Nonprofit Utilizes an LXP for Mission-Critical Patient Care
Rachell Robson | 7 min read
Wisetail Enables Healthcare Nonprofit to Support Employees, Affiliates, Partners & Volunteers
Cancer Support Community (CSC) history dates back to 1972 when Harriet Benjamin was diagnosed with cancer. Her husband, Dr. Benjamin, sought out a community that would provide social and emotional support for his wife. After coming up short, in 1982, Dr. Benjamin opened the doors to The Wellness Community in Santa Monica, California.
Original Saturday Night Live cast member Gilda Radner was diagnosed with ovarian cancer in 1986. Gilda Radner’s experience with The Wellness Community during her fight greatly impacted her and inspired her to follow a similar path. After the tragic loss of Gilda Radner, her husband, Gene Wilder, and Joanna Bull co-founded Gilda’s Club, a community organization for people with cancer, their families, and friends. With Dr. Benjamin’s vision in mind, Gilda’s Club offered support and networking groups, lectures, workshops, and social events — all free of charge. In 2009, Gilda’s Club merged with The Wellness Community to form the Cancer Support Community (CSC).
Today, CSC is a global organization dedicated to helping patients and family members going through cancer treatment. It has a network inclusive of 45 markets containing 50 affiliates and healthcare partners with over 175 locations. CSC has three strategic arms: The Research and Training Institute, Cancer Policy Institute, and the Institute for Excellence in Psychosocial Care.
In order to get information across its network, CSC used a combination of emails, phone calls, webinars, and in-person meetings a couple of times a year. Employees in the network were getting inundated with emails daily, and many of CSC’s messages were lost with these communication challenges.
“I averaged at least 20 to 30 emails a week requesting documents, policies, and by-laws.”- Sally WernerRN, BSN, MSHA, Senior Vice President, Affiliate Relations
Affiliates and partners constantly reached out to headquarters to gather content, training, and more pertinent information from the nonprofit, and vital information was spread across multiple locations, making it difficult to find. When the team could find what it needed, the messaging was inconsistent or outdated.
Since CSC is a global organization, time zones made it difficult to connect all affiliates at once. Aside from the occasional in-person meetings, the network as a whole did not have an efficient outlet for collaboration. Each affiliate was disconnected from their peers and from learning best practices to better support their mission: the patients and their families.
“Our methods of communication in the past were primarily over the phone, and zoom really wasn't a thing yet. We had some in-person meetings a couple of times a year, and some webinars. As you can imagine, communication was really a pain point for us because we're a global organization.”- Sally WernerRN, BSN, MSHA, Senior Vice President, Affiliate Relations
After an analysis of fellow federated organizations, the CSC discovered that an intranet solution would be the best way for them to connect to its network. Other nonprofit associations described an LMS that provided affiliates with information and training on their own time and not the headquarters time. Wisetail was introduced to CSC after a recommendation from a local Montana affiliate. CSC was attracted to Wisetail’s experience with franchise models since most large nonprofits operate similarly to this model. The CSC team also was excited that the platform — and LMS and LXP solution — could be completely customized to feel like its own brand. This would become the “one source of truth” for CSC’s entire network.
Once implemented, CSC set out to make the best system for its affiliates. The team surveyed the stakeholders to find out what they would like to see in the new system. The number one requests were tools, templates, and resources so the affiliate and partner community could increase their knowledge.
The CSC community can now leverage the work each chapter or affiliate is doing to create better patient outcomes. What blossomed, was a tight-knit community filled with support, appreciation, and an increased level of care.
Affiliates no longer have to wait for answers or send multiple emails to collect information. They can log onto the Community Hub and find information ranging from by-laws, support group policy examples to branded templates and social media messaging — even collaborate with experts on a topic.
The benefits of the Community Hub have helped CSC continue its mission and build a more robust network for cancer care.
Building a Community
On the front page of the Community Hub, a dedicated team provides updates from news sources across the country so everyone in the network can see what is happening within the organization. The network has turned into one solid community. The affiliates are no longer detached from one another. Now, with the help of the profiles on the Community Hub, they can reach out to one another to get advice, collaborate, or brainstorm. This has facilitated peer-to-peer learning and created a culture of organizational community for CSC.
As with other 501(c)3 associations, CSC has a myriad of board members and temporary or long-term volunteers who all require training and communication throughout their time with CSC. All the courses and training are now housed on the Community Hub. Learners can complete the training from wherever they like on their own time. The entire process has been streamlined and supplies a convenience that is invaluable to the CSC.
Affiliate admins also use the courses to learn more about areas like fundraising, development, marketing, and board education. The stronger and more knowledgeable the network is, the better care the patients receive.
“The way that our network uses our Community Hub to interact with each other, has certainly improved communication from affiliate to affiliate. It certainly has improved their grant writing processes because they have all of that information at their fingertips versus having to spend a lot of time searching and finding really good quality evidence and research-based information.”- Sally WernerRN, BSN, MSHA, Senior Vice President, Affiliate Relations
Saving Time & Managing Expectations
Aside from the training and community development, the CSC also has the ability to evaluate the effectiveness of its training and ensure they stay on track with requirements from the government. Previously, CSC headquarters would take a deep dive into each affiliate and complete a standard quality review every five years. Now, affiliates can go into the Community Hub and see what is required for 501(c)3 organizations under the law. This ensures the CSC meets regulated key performance indicators. Admins can also use this data to compare themselves quarter-over-quarter or year-over-year to other affiliates.
For headquarters, the Community Hub is also monitored for its usage. CSC pulls reports by departments to evaluate which resources are being used and which areas need improvement. Popular areas of the system show trends and further help the CSC provide the most up-to-date information and resources for the affiliates and, as a result, the patients.
Bringing it Full Circle
Enhancing the CSC’s network is multi-faceted. Every idea, innovation, and time put into the Community Hub directly improves the participants’ care and support. Health and wellness come first, and the Community Hub has continued to be designed with patients in mind.
“It improves the patient’s care because the program staff from all the affiliates that serve them are on the Community Hub. Affiliates can just go in and empower themselves with new information. There are specific discussion boards for the licensed mental health professional, so you can also get feedback, new ideas, and best practices for facilitating support groups there. Participants are benefiting from the knowledge that the licensed mental professionals provide, and we see the results in better care.”- Kelly HendershotSenior Director of Programs, Cancer Support Community