In the face of a difficult diagnosis, take a lesson from Karen Peterson. On her website for Karen’s Club, a nonprofit with a mission to connect diverse patients with clinical research trials, she’s wearing boxing gloves.
It’s fitting. After a recurrence of metastatic breast cancer, Peterson had to fight through obstacles to find and enroll in an immunotherapy clinical. A single mom with an autistic, nonverbal adult son, she was determined to find a way out. It worked. Today, she’s healthy and hoping to empower patients of color with knowledge about clinical trials.
Deirdre BeVard, CSL Behring’s Senior Vice President for R&D Strategic Operations, interviewed Peterson at the recent Patients As Partners event in Philadelphia. For several years, CSL has been active in supporting outreach programs about clinical trials and improving the patient experience.
“I was honored and humbled to moderate the patient keynote and share the stage with Karen Peterson,” BeVard said. “Karen became her own advocate to get the care that eventually saved her life – and it was in a clinical trial. Her personal experience inspired her to help other patients of color – who might be skeptical – understand the complex world of clinical trials.”
When Peterson tells her story, it’s moving and authentic because of her lived experience as a patient and a clinical trial participant, BeVard said. She’s particularly gifted at connecting with others, something that was clear during BeVard’s short interview with her.
“It was only a 30-minute session but the full range of emotion was on display. We laughed, we cried. It was intense and yet light hearted,” BeVard said.
Peterson is a role model for her resilience and for how she took action while facing the most difficult circumstances. Not everyone would or could have been so determined, BeVard said.
“When she talks about how she educated herself, was relentless in pursuing options, and was courageous in her interactions, she does so as if it’s how everyone would act. It’s not.”
Also at the Patients As Partners event, CSL Behring’s Ellyn Getz, Director, R&D Patient Partnerships, shared an update on CSL’s digital patient engagement focus through the anticipated launch of the Electronic Patient Engagement Exchange (EPEX), which includes a patient-facing website. CSL co-developed this engagement platform with patients and site partners by gathering input in workshops and advisory board settings. She emphasized the importance of validating new ideas with patients and their support teams, as well as managing expectations and being transparent as CSL further builds trust and establishes new partnerships.