Patient Perspectives from the Canadian Pathways to Access and Reimbursement Conference

Roche Canada has partnered with patient advocates to author a series of articles to amplify their unique stories, experiences, and advice. These narratives, representing their views, aim to inspire and mobilize, and provide valuable insights from those who have firsthand experience.

Guest Blog By Robby Spring, Patient Advocate and Partner

In 2023, my relationship with the healthcare system profoundly shifted when I was diagnosed with breast cancer. In addition to my diagnosis, my sister was facing her own cancer journey, echoing our mother's experience with cancer five years prior. Further, our father was diagnosed with prostate cancer at the end of 2023. With four out of five immediate family members facing cancer within five years, I gained a perspective I never anticipated, one that has since propelled me toward patient advocacy and engagement.

With two master's degrees, one in neuroscience and the other in translational research, and extensive experience across research, hospital, industry, and government, I have felt uniquely positioned to contribute meaningfully to the cancer-patient engagement space as both a storyteller and partner. This is why, on the flip side of being treated for breast cancer, I have returned to my career as a patient advocate. My mission is to advance person-centred innovation and healthcare by integrating lived experience in policy, early-stage innovation, business practices, and healthcare delivery. This new career trajectory, which integrates my academic and professional background with my lived experience, has felt validating. Many of my colleagues have made me feel seen, heard, and valued, reinforcing my belief that patient voices are not only impactful but essential. Yet not all experiences have reflected this. At times, being invited in as a patient partner has come with barriers that make it harder to contribute meaningfully, as though our perspectives are welcome, but not always treated as equal.

Striving for Meaningful Patient Engagement 

I was thrilled when Roche Canada and Unum Co. invited me to co-create and participate as a patient partner at the Canadian Pathways to Access and Reimbursement Conference. Networking, co-design, patient perspectives, and reimbursement of health innovation all aligned with my passions and professional pursuits.

Working with Roche before and during the conference was a smooth and enjoyable process –my insights and time were valued as if I were a colleague. We share a vision for what patient partnership could and should look like, and furthermore, have a desire to advance access to innovative medicines in Canada.

Our panel, a blend of three patient partners, along with Roche, and Unum Co., was fantastic. We were energized by productive brainstorming sessions filled with optimism and collaborative spirit. However, my experience at the conference showcased the incredible potential and areas for growth in how we involve and engage with patients. 

The following are some of my observations on how to ensure meaningful and intentional patient engagement: 

1. Prioritize diverse patient perspectives throughout conference agendas to ensure discussions are grounded in real-world experiences.

2. Conference sessions are often traditional and lecture-based, limiting opportunities to break down professional silos and adopt patient-centred lenses. In contrast, our panel, strategically positioned at day's end, was designed to be participatory and engaging, demonstrating how interactive formats can foster more meaningful dialogue and shift perspectives.

3. Our case study mirrored common industry scenarios, which highlighted the need to push participants to think beyond familiar boundaries. Introducing novel and thought-provoking scenarios could better challenge attendees to embrace fresh perspectives and move beyond their comfort zones. 

4. Facilitating effective dialogue proved to be more complex than anticipated. Being prepared for different audiences can help encourage balanced participation from all attendees.

5. Interactions with stakeholders that work with patients revealed their strong commitment and dedication. To further enhance their impact, it's important to create space for learning from diverse and new patient experiences. By fostering empathy and openness, stakeholders can enrich their perspectives and better understand the unique needs of all patients.

Conference Reflections 

As a facilitator and attendee on day one of the conference, I observed key discussions that provided insights into the current challenges and opportunities in advancing pathways to access and reimbursement. These discussions underscored broader systemic gaps, particularly concerning patient involvement in Health Technology Assessment (HTA) submissions. Stakeholders repeatedly noted that by the time HTA submissions occur, eligible patients are often no longer available to contribute. Limited solutions were proposed beyond strengthening relationships with healthcare practitioners to access suitable patients. My perspective, especially relevant in rare diseases, is that HTA bodies must develop flexible, inclusive mechanisms across Canada’s funding and reimbursement processes that accommodate patient contributions early, ensuring that robust patient input genuinely informs decision-making.

Clearly, engaging patients from the very beginning of drug development through clinical trials, regulatory approvals, and beyond is fundamental. Understanding and quantifying patient experiences such as side effects, caregiving burdens, employment impacts, is integral to clinical trials and economic evaluations. While quantifying deeply personal experiences can feel difficult to patients, it is essential for payer decision-making. Survival, notably, isn't always patients' primary criterion when choosing treatments; quality of life often holds equal or greater importance (it did for me). 

Reflecting afterward, I contemplated the opportunities to enhance patient engagement in such processes. My experiences within patient advocacy and oncology communities reveal an abundance of patients eager to contribute, yet pathways to meaningful engagement often seem inaccessible or unclear. Patient advocacy organizations play a crucial role in facilitating patient engagement, yet there are occasions when their functions might not fully encompass the broader spectrum of patient voices. Could a more streamlined, transparent, and inclusive approach enhance meaningful participation?

A Path Forward

With these considerations in mind, I am hopeful that these insights inspire stakeholders, industry leaders, patient groups, and conference organizers, to authentically integrate patient voices into all stages of healthcare innovation and decision-making. True patient partnership is not merely an ideal; it is essential for developing treatments and health systems that genuinely reflect and serve patient needs. My collaboration with Roche and my interactions with their new Chief Patient Experience Officer, Lisa Petermann, reinforced our shared vision for the future of patient partnership. While I felt there were areas to improve my own contribution at the conference, my hope is that these reflections will encourage other partners to enhance their engagement efforts and continue facilitating these important dialogues.