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Advocating to Give Patients a Voice


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Meet Pam Cusick, an esteemed research professional with over 30 years of experience in study design, implementation, and analysis. Pam's journey in public health communications and research has been driven by her unwavering passion for patient advocacy, a passion that seamlessly aligns with Rare Patient Voice's mission and vision.

As the Senior Vice President of Rare Patient Voice, Pam spearheads initiatives aimed at expanding the organization's panels to encompass all patients and caregivers eager to share their insights and influence their disease categories. Her dedication to amplifying patient voices is evident in her focus on the continued growth and success of RPV.

What Inspired Pam Cusick to Become a Patient Advocate?

In her advocacy efforts, Pam Cusick focuses on facilitating patients in sharing their voices. With a background rooted in public health research, Pam transitioned into pharmaceutical research with a specific emphasis on delivering information to patients in a comprehensible format tailored to their needs. 

This journey ultimately led her to her current role within Rare Patient Voice, where the organization acts as a matchmaker connecting patients and caregivers with research opportunities. Pam and her team engage with patients at events such as the National Hemophilia Foundation Conference or National Sickle Cell Conference, informing them about various research opportunities available, ranging from surveys and focus groups to clinical trials. Importantly, participants are under no obligation to partake in any research activities upon joining the community.

Discovering the Niche Market of Recruiting Patients for Research

Having worked passionately for years in the consumer area of business, Pam Cusick discovered there was a burgeoning growth in that industry. There began to be a lot of talk about patient’s voices and how more patient-centricity was needed.

Pam recalls discussions about how at the time there was really no organization specifically recruiting patients for research. That might have been because patient recruiting is sometimes very complicated. But Pam and RPV’s founder Wes Michael had a vision to do it differently —and more effectively, giving caregivers and patients from all walks of life the chance to share their stories. 

Empowering Patients to Realize They Are Experts

Pam Cusick enthusiastically engages with patients and caregivers at various conferences and events, where she educates them about Rare Patient Voice's mission. When individuals express uncertainty about the value of sharing their experiences, Pam passionately assures them of the significance of their perspectives. 

She emphasizes that their firsthand knowledge of living with their condition on a day-to-day basis makes them experts in their own right, often surpassing the understanding of medical professionals. Pam's encouragement prompts individuals to recognize the importance of their stories and the therapeutic and motivating impact of sharing their journeys with interviewers and moderators.

Listen to this episode to learn about...

  • [4:31] How public health research informs Pam’s advocacy
  • [5:31] How patients are empowered by sharing their stories  
  • [11:22] Why DEI is thriving in healthcare advocacy 

Tune in to the Members Only episode to learn why clinical research benefits from more inclusivity of patients.