Leading figures in the world of prostate cancer advocacy have spoken about the importance of finding ways to help hard to reach patient communities.
A webinar, held as part of Change Together’s Prostate Cancer Awareness Month (PCAM) series, focused on communication and engagement and how advocacy groups can address the unique challenges of their communities.
Speakers included Jamie Bearse, CEO of ZERO – The End of Prostate Cancer, Thomas Farrington, President and Founder of the Prostate Health Education Network (PHEN) and Chuck Strand, CEO of Us TOO International.
Jenny Kite, Assistant Director of Stakeholder Engagement at Astellas and webinar moderator, said the discussion showed advocacy groups needed to be nimble and willing to change.
“Issues change, communication channels change and the patients we are trying to reach change. It’s key to try and reach patients in a variety of ways,” she said.
“Groups need to provide value by giving patients what they want, knowing what they want, and making sure they empower patients to overcome the major challenges they are facing.”
All three speakers explained ways in which their organizations were doing just that, such as PHEN’s Broadway-style stage play, Daddy’s Boys.
“We’re finding that using entertainment to educate is very effective,” said Thomas, whose group raises awareness of prostate cancer disparity among the African American community by partnering with churches across the USA.
“We have drawn 1,000-plus people for each of these performances. In addition, we have workshops and speakers, and we’ve also done screening at some of these events.”
Removing barriers to clinical trial access is an issue many advocacy groups struggle with. Both PHEN and Us TOO have set up patient-friendly study databases that make it easier for people to find studies they could participate in.
“ClinicalTrials.gov can be unwieldy in terms of navigating all the information. The value of the clinical trials finder on our website is the patient can enter information about their disease state and any preferences that they might have for a type of clinical trial or a location. The service will provide a short list of different clinical trials that would be specific to that criteria,” said Chuck, adding the charity also operated a toll-free phone line which gave people the option of speaking to a trial navigator in English or Spanish.
Utilizing the internet to reach people was a common theme throughout the webinar.
Speaking about ZERO’s Facebook group, Jamie said: “It’s almost self-moderating. People put in their different questions, issues or problems and a lot of people chime in with their perspective.”
“It’s nearly self-sufficient and is growing every day. We have more than 1,100 members and we only started it a few months ago!”
PHEN is about to start live-streaming educational sessions through the Facebook pages of the churches it works with – and the potential audience is quite large.
Said Tom: “Some of our church partners have thousands of followers. The largest one I’ve seen is over 20,000. As we tap into those avenues and channels to reach people, it’s very exciting and our partners are very excited about it, too.”
Innovation isn’t exclusively online, though, as ZERO’s ethos of connecting to the power of people shows.
The non-profit facilitates an annual run/walk event, which this year saw 42 communities across the USA take part. The events, which attract more than 25,000 participants, act as a gateway to the charity’s initiatives.
“We invite people not to just put on their running shoes or walking shoes for the day, but to take an active role in the cause by spreading the word and being a prostate cancer champion,” said Jamie.
To watch the webinar, please click here.