Joining forces with local and global communities is the key to raising awareness and ending prostate cancer.
That was the message from a special Change Together Prostate Cancer Awareness Month (PCAM) webinar held in October 2018.
Chaired by Jenny Kite, Assistant Director of Stakeholder Engagement at Astellas, Engaging with Patient Communities: Tailoring Approaches to Address Unique Challenges brought together three of the country’s leading prostate cancer advocacy groups.
Representatives from ZERO: The End of Prostate Cancer, the Prostate Health Education Network (PHEN) and Us TOO International spoke about how utilizing community links can further the vision of a prostate cancer-free world.
Chuck Strand, CEO at Us TOO, said: “People from more than 100 countries go onto our website. It’s important to have that international reach because the information we provide is important regardless of where people live.”
Us TOO is currently partnering with both the Ironman Registry and Movember on a global project to encourage men with advanced disease to share their data. This will then be used to track the most effective interventions.
ZERO CEO Jamie Bearse added: “The bottom line is we need more engagement like this, because what works well on one side of the ocean might work just as well on the other.”
“Being able to pull together and collaborate, share best practice and great ideas that might work to galvanize the movement is a key building block going forward.”
Thomas Farrington is President and Founder of PHEN, a group that aims to eliminate the prostate cancer disparity in African American men. He emphasized the importance of working locally when trying to engage hard to reach communities.
“We’ve partnered with more than 1,000 churches and that number is growing. We reach into almost every community around the country,” he said.
These church partners host educational symposia during which local medical experts are invited to present.
Said Tom: “One of the good things with that is that we’re able to connect patients and the community with providers.”
“I’ve seen patients make arrangements for follow-up visits at these events. Being able to bring them together, community by community is very, very effective.”
Chuck agreed, explaining that Us TOO facilitates local, volunteer-led, face-to-face peer support group meetings across the USA.
He said: “Our local support group leaders are always connecting with physicians who come in to speak at the meetings.
“Physicians appreciate the opportunity to have more face time with patients and get a better feel for the major issues and questions. It gives them ample time to have that discussion.”
As previously reported on Change Together, ZERO hosts annual Prostate Cancer Run/Walk events. This year’s program took place in 42 towns and cities all over the USA.
Jamie credited the success of the 10-year-old program to the charity’s partnerships with the people on the ground in each location.
“ZERO is a network, and the things we do to get the word out, to bring the community in, depend on that network – the doctors’ offices that we partner with and the local people on the ground,” he said, adding the charity often also worked with local media outlets and musicians on the events.
Collaboration within the advocacy community itself is also key to success, said Chuck, whose organization is working with Imerman Angels. He explained it was a separate, cancer-wide non-profit that has set up a mentor scheme.
“A caller to our helpline can also go to Imerman Angels to register for a prostate cancer mentor. That person would be selected based on the caller’s criteria, and they can be there to help them throughout their journey,” said Chuck.
To watch the webinar, please click here.