Increasing clinical trial participation among African American men is mission critical for the Prostate Health Education Network (PHEN).
President and Founder, Thomas Farrington, said the group had placed tackling this problem at the very heart of its activities.
“Look at the health disparities. There is a big difference in outcomes from prostate cancer between black people and others,” he explained.1
“As new treatments are developed, it’s important to know how they impact African American men specifically. We know there are genetic and biological differences, and that different men respond differently to different treatments.”
African American men are the most severely impacted by prostate cancer, both in terms of diagnoses and death rates,1 he said.
Improving trial participation
“African American men really need to be included in clinical trials, so we can understand what works and what doesn’t.”
“The importance of participation begins with prevention and works its way through to each one of the treatments. We need to know how they work for black men and what the differences are,” Thomas said.
Asked what the main barriers were, Thomas said there was a lack of awareness on the benefits of clinical trials and that people were simply not being asked to participate.
To tackle this two-pronged problem, the network focuses on education and empowerment.
Thomas said: “We are out in communities, raising awareness and educating men through our clinical trials rallies. We are trying to get men to ‘ask in’. We want patients to become proactive and to ask about clinical trials.”
“We launched these rallies because our mission is to eliminate the African American prostate cancer disparity with a focus on education and awareness. We believe that participation in clinical trials is critical to addressing this disparity.”
Entertainment to educate
PHEN distributes educational materials, including patient-friendly clinical trial information and plain English descriptions of clinical trials, at its events. These include Daddy’s Boys, a stage play focused on an African American family dealing with the fallout of prostate cancer.
“We have integrated the discussion about trials into the play, which draws over 1,000 men and women to each performance. We want to get to the point where patients understand clinical trials as a treatment option and they ‘ask in’.”
And it appears to be working. Feedback surveys show an increase in understanding of, and willingness to participate in, clinical trials, and pharmaceutical industry partners are reporting an upward trend in uptake.
“We are being proactive, and while we do have a way to go, we are making progress,” said Thomas.
PHEN TV reaching thousands
The campaign is also set to get something of a boost in the coming weeks, thanks to a new initiative due to launch at the group’s 14th Annual Summit in Washington, DC.
Since 2011, PHEN has been webcasting PHEN TV, a live health education program, featuring a monthly talk from a medical expert. Last year, the charity decided to stream the talk over its Facebook page – and received a staggering 5,000-plus unique viewers.
“We were blown away by that,” said Thomas, adding that the more than 1,000 churches PHEN works with around the country are now being brought into the initiative.
The first Facebook live stream, encompassing a handful of the churches, will be from the Annual Summit. Over the coming months, PHEN TV will be rolled out to the social media pages in more and more communities.
“As we bring them all up to speed, we will have a tremendous ability to impact on clinical trial participation and just about anything to do with prostate cancer in African American men.
“Prostate cancer visibility will be heightened tremendously, because we will be reaching very large numbers of men and women. We are very excited about this,” said Thomas.
To hear more, listen to Thomas when he takes part in our upcoming webinar on October 11. Click here to find out more.
Howlader N, Noone AM, Krapcho M, Garshell J, Miller D, Altekruse SF, et al (eds). SEER Cancer Statistics Review, 1975-2012, National Cancer Institute. Bethesda, MD, https://seer.cancer.gov/csr/1975_2012/, based on November 2014 SEER data submission, posted to the SEER web site, April 2015.