PAP 2025: Creating an Independent Patient Assistance Foundation

In a video interview with Pharma Commerce, Rachel Thorpe, executive director at the Otsuka Patient Assistance Foundation, discusses two key sessions: "Establishing and Transitioning to a Foundation" and "Empowering Patients to Take Control of Their Healthcare." The first session focuses on the important aspects of transitioning to a foundation, emphasizing the risks associated with regulations and the need for robust patient support programs. The second session highlights the importance of guiding patients through their healthcare journey by removing barriers and enhancing their health literacy, helping them make informed health choices.

Thorpe outlines three critical factors when creating an independent patient assistance program (PAP) foundation: risk tolerance, conflict of interest, and funding stability. These factors are essential to ensure the successful operation and long-term sustainability of the foundation. She also stresses the importance of maintaining clear separation between the foundation and its core business operations, focusing on good stewardship and well-defined guidelines.

Thorpe emphasizes the significance of patient empowerment, noting that most patients struggle with understanding healthcare terms and concepts, with many having low health literacy. Empowering patients by improving their understanding of healthcare options is vital to help them make better health decisions.

Regarding digital innovation, Thorpe explains that while digital tools are crucial for patient engagement and literacy, they must be simple and engaging. Given the overwhelming digital landscape patients face, it’s important to create experiences that are easy to navigate and actively keep patients engaged, as prolonged use can be challenging. Simplifying digital interactions helps avoid patient fatigue and ensures long-term engagement.

A transcript of her conversation with PC can be found below.

PC: What factors should be considered when creating an independent PAP foundation?

Thorpe: So with regard to how to transition a foundation, or if you're thinking about transitioning to an external foundation, there are three factors that you have to think through. One is risk tolerance—what the manufacturer’s risk tolerance is, what the future foundation’s risk tolerance is.

Secondly is conflict of interest. What are the some of the conflict of interests that are associated with the manufacturer and the foundation? And then, what is your funding stability? What is your long-term plan to sustain these programs indefinitely, or within the terms of the patient or product population?