The Power of Co-Creation: How Authentic Patient Partnership Leaves a Lasting Legacy

“What made the PCC meaningful was that patient partners were not simply invited to respond to decisions already made. We were invited earlier into the process, where lived experience could help shape the questions, priorities, and solutions.”

Hamlet Nation, Inaugural Member of the Patient Co-Creation Council

Five years ago, Roche Canada launched the Patient Co-Creation Council (PCC) with a clear goal: to put the lived experiences of patients at the heart of our organizational strategy and decision-making. Since 2020, the PCC has helped shift how we work by demonstrating the value of engaging patient partners early, building true partnership, and embedding lived experience into decision-making. 

As the inaugural Council cohort reaches the end of its term and we welcome new voices, we are pausing to celebrate the impact of their contributions. Through a five-year retrospective exercise, Hamlet Nation, a patient partner from the PCC’s inception, captured the defining moments of the PCC’s partnership with Roche Canada, as well as the Council’s evolution. Below is a summary of these insights to advance the broader conversation on authentic patient co-creation, and inspire the next generation of contributors.  At its core, the retrospective shows that co-creation is not simply about listening to patient perspectives, but about creating a structured way for patient partners to help shape priorities, decisions, and solutions from the outset.

The Power of Co-Creation: How Authentic Patient Partnership Leaves a Lasting Legacy

By: Hamlet Nation, Patient Partner

Establishment and Operating Principles of the PCC

The PCC is a diverse, system-level advisory group initially composed of five patients and caregivers alongside Roche staff, including leadership from the Chief Patient Experience Officer. The Council has since grown to include an additional eight members, and a Francophone patient council (“le Pôle expériences vécues francophone”) to ensure equitable representation and integrate the unique perspectives of French-speaking communities across Canada. The PCC transcends specific disease areas to influence broader organizational practices and system-level engagement strategies. Rather than providing feedback on pre-developed work, the PCC utilizes a co-creation model that involves patient perspectives early on to define problems and shape solutions. This collaborative approach has been key to the PCC’s success, with Council input increasingly sought to inform and strengthen key initiatives. 

Value of the Co-Creation Model

With the help of the PCC, Roche Canada has experienced a mindset shift, transforming the corporate culture from viewing patients as external stakeholders to recognizing them as integral partners in decision-making. This approach has embedded patient voices across teams, driving a measurable impact across four key areas: 

• Shaping organizational governance and leadership recruitment, 

• Ensuring project-level initiatives are deeply patient-informed, 

• Embedding inclusive and shared decision-making to influence broader healthcare access discussions, and

• Informing access, policy, and system-level discussions to strengthen patient inclusion across the wider healthcare ecosystem.

Success Factors and Lessons Learned

This Council wasn’t built overnight; it required visible, passionate leadership, as well as support, and a shared commitment to treat the PCC as an iterative learning process for everyone. We quickly realized that to turn strategic intent into real-world impact, a lot of hard work had to happen behind the scenes. This required defining co-creation, aligning with Roche’s core decision-making structures, and intentionally focusing on a smaller number of high-impact initiatives. In addition to preparing internal teams for entirely new ways of collaboration and establishing clear mechanisms to measure progress, it also required recognizing the time, emotional effort, and personal vulnerability involved when patient partners contribute lived experience to organizational decision-making. 

By moving past traditional feedback loops and inviting patients to the table from day one, we ensure priorities are grounded in real human needs rather than assumptions. Our collective impact was reflected across a variety of initiatives, including:

• Establishing measurement strategies to evaluate patient experiences

• Contributing to external thought leadership through blogs and podcasts

• Shaping Roche Canada’s mid-term strategic outcomes

• Co-creating the Indigenous pillar of the Inclusion and Belonging Strategy

• Playing a foundational role in establishing the position of Chief Patient Experience Officer, now held by Lisa Petermann. 

Success came down to being incredibly deliberate about how and where the Council engaged, ensuring our work aligned closely with business and system priorities. By leaning into continuous adaptation, operational clarity, and sustained executive support, this partnership translated abstract principles into consistent, everyday practice. Ultimately, this model transformed patient partnership from a project checklist into the natural heartbeat of how Roche works.

Recommendations and Looking Ahead

Our journey over the last five years highlights several practical best practices for sustaining genuine patient co-creation: engaging patient partners early, focusing on high-impact initiatives, embedding co-creation into organizational processes, supporting patient partners appropriately, and strengthening how impact is measured and communicated. By continuously learning and refining our approach together, we’ve strengthened the PCC at Roche Canada and, we hope, created a valuable blueprint for other organizations to adapt. As we look to the future, the next generation of the PCC has an exciting opportunity to integrate even more deeply, boost the visibility of their contributions, and enhance how success is measured. 

For those thinking of setting up a co-creation council within your own organization, don’t wait for the perfect framework to begin. Start by simply inviting patients to the table and learning alongside them. Let’s continue the discussion of how we can all work together to elevate patient voices across the life sciences sector. 

A Final Thank You

As this chapter comes to a close, I want to extend a special thank you to my fellow outgoing members, Rinat Avitzur, Kerri Beirnes, Natasha Bascevan, and Robin Harkness. Over the years, we have challenged assumptions, broken barriers, and built something truly lasting together. It has been an honour collaborating alongside each of you, and while our time on the Council may be coming to a close, the impact of our contributions will continue to redefine how organizations partner with the communities they serve. We are proud that the PCC stands as a strong, evolving model ready to inspire the future of authentic patient partnership between organizations and the people they serve.

What made the PCC meaningful was that patient partners were not simply invited to respond to decisions already made. We were invited earlier into the process, where lived experience could help shape the questions, priorities, and solutions