PAP 2025: Why Patient Empowerment is Key

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: How can foundations ensure that they maintain strong patient support while operating separately from their core businesses?

Thorpe: In general, foundations should really have separation, and that separation is really focused in on two factors. Number one, good stewardship, and building cohesive guardrails and guidelines that offset those parameters for both the manufacturer as well as the foundation.

PC: Why is patient empowerment so important?

Thorpe: Empowering patients is really important because patients do not understand healthcare in general. Nine out of 10 patients do not understand simple healthcare terms. Thirty-three percent of our population reads at a third-grade level, so health literacy is very important when building patient assistance programs, because we really want the patient to embrace their health journey and make good health choices. Without that education and that knowledge, they are at a disadvantage, and we want to broaden their awareness and their understanding so that they can engage in their health journey.

PC: What role does digital innovation play in enhancing patient engagement and healthcare literacy?

Thorpe: Digital technology is, of course, extremely important across all entities. We're really engaged with the digital innovation. With regard to foundations in patient support, understanding the patient journey is key. Digital innovation may or may not work for the patients that we serve. When you do have digital innovation, keep it engaging with what the patient is doing, what the patient is experiencing in their health journey, and then keep it simple. We want simplicity when we're talking to our patients. They are so engaged with all these digital components, that it's almost overwhelming, and so we want it engaging and simple. Keep it active. One of the biggest things is the boredom that happens—patients engage for a little bit, but not for a long term. And so, how do you keep it engaging, and how do you keep patients active in utilizing the digital tools?