An estimated 175,000 men will be diagnosed with prostate cancer in the US this year, according to the American Cancer Society – so how can patient advocacy groups best use their resources to reach and support them?
“We focus heavily on our YouTube channel and we’re finding a new audience there just from people Googling ‘prostate cancer’,” says Alexandra Scholz, Chief Executive Officer of the Prostate Cancer Research Institute.
“Providing scientifically-backed disease information is what we are passionate about, and we use a variety of different platforms to educate people. We have a strong handle on new technology so we can get that message out consistently and effectively across our platforms.
“We feel it’s our responsibility to put the new science into patient language and make sure it’s available to them. We want them to know about any new drugs or imaging techniques that are coming out.”
Delivering on new trends
“We are starting to see a change as younger men who are used to using the internet are, sadly starting to get prostate cancer,” Alexandra notes. “Anytime we notice a trend in what people are searching for or looking at, we can create content – videos, quizzes, infographics – that meet that need and educate people.”
The team creates video content on a weekly basis and the channel hosts animations and interviews with both healthcare professionals and patients, she adds.
“I love this approach because people go to YouTube for so much,” Alexandra says.
Keeping your head in the game
“It’s about keeping our head in the game and ears to the ground so we can really hear what these patients need,” notes Alexandra.
It’s also important to take time to reflect, says Alexandra, and to say to yourself: “We’re actually making a difference, and I’m really grateful to be here.” This internal motivation triggers creativity, so we are always asking ‘What new innovation and ideas can we create from this? What can we do that would help patients even more?’”
“As advocacy groups, we really take a hold of new technologies and not let them intimidate us. We can learn just like a prostate cancer patient has to learn a whole new disease state,” Alexandra believes. “It’s not just talking about the treatment space, but should we be using different ways of analyzing data? Should we update our websites and make them more user-friendly experiences for the patient? Should we take hold of social media? What new platforms should we be on?”
With this in mind, PCRI is looking at Pinterest for care partners, “because a lot of women and men are trying to educate themselves with infographics they’ve found on Pinterest. Thinking outside the box technology-wise and running for it, going for it, is where advocacy groups are heading.”