“You have to think outside the box, says Alexandra Scholz, Chief Executive Officer at Prostate Cancer Research Institute (PCRI). As every patient advocacy group knows, it can be difficult to engage people in their own health journey – and that’s why teams need to be creative.
“It’s easy to fall into the pattern of creating the same types of media, but sometimes you need to take that message and present it in a different way,” Alexandra reveals in an interview for Change Together.
This Prostate Cancer Awareness Month, for example, PCRI developed a multi-media “staging system” for men living with a diagnosis.
For people who have been diagnosed with prostate cancer, this educational tool includes an interactive quiz on prostate cancer staging, which links to a guide specific to that person’s disease phase and treatment options, as well as side effects and lifestyle considerations. All of this is backed up by a series of YouTube videos and a free telephone helpline.
“I never thought PCRI would be doing quizzes. But through the data we’re able to collect and analyse, we can see the patterns of what information people need, and that helps us make better plans for the future.”
Patient and care partner conference
September also saw the annual Prostate Cancer Patient Conference for both patients and care partners take place, attracting between 700 and 800 people. “We’re really lucky to be able to do what we do,” says Alexandra. “We try to make it possible for patients to be able to attend all three days.”
Attendees are split into groups and directed to sessions and peer support opportunities that match their disease state. They are then able to speak with doctors who specialize in that area, as well as support group leaders and other patients, to hear what they are going through and to share stories with others in the same position.
“It’s not your typical medical conference. We want to create a loving, pressure-free environment where people aren’t afraid to ask questions.
“We have a following of conference attendees, people who have been coming for 10-14 years who are dedicated to their health and are doing great. We feel it’s our responsibility to put new updates in science and medicine into patient-friendly language and make it freely available.”
From face-to-face to social
It’s the perfect opportunity to engage with patients face-to-face, but the key to continuing that is social media, Alexandra believes.
“Patient advocacy groups really need to take hold of social media, because it has a much bigger impact than we realize,” she notes, adding that it is important to have a consistent message across all platforms during an awareness month.
“That’s really key because in a world that’s saturated with media, how else can you stand out and continually get your message across?”