Roche’s Infinity model: Helping to transform the lives of patients with rare diseases

Anne Nijs explains how the rare-disease group at Roche Pharmaceuticals pioneered a new model that puts the patient experience at the center of healthcare innovation and delivery.

Powerful forces are reshaping today’s healthcare landscape. Patients are not only becoming better informed about their own health and more engaged with treatment but also beginning to expect that healthcare providers will deliver medicines and services with the same convenience, timeliness, and ease they experience when buying consumer products. At the same time, digital technology offers a range of new ways for healthcare providers and patients to communicate. Against this backdrop, many companies are striving to develop a distinctive patient-centered experience to help them stand out from their peers and foster better health outcomes. These companies try to see the world through the eyes of patients to gain insight into their hopes and fears, the problems they face, and what it takes to solve them.

The patient’s experience is critical in all therapeutic areas, but never more so than for patients with rare conditions. As the transformation lead for rare conditions at Roche Pharmaceuticals, Anne Nijs has seen the value of a patient-centered approach at first hand. She spoke with Jan Ascher, a senior partner in McKinsey’s Zurich office, and Anton Chtcherbakov, a partner in the Geneva office, about how her organization implemented a new operating model to transform outcomes for patients with rare diseases.

McKinsey: Why did Roche decide to anchor its patient-centered transformation in rare diseases?

Anne Nijs: If you have a rare disease, you are one of a relatively small number of patients with a condition that is probably not well researched or understood. Teams caring for these patients need expertise in multiple disciplines, from genetic counseling to physiotherapy, with a range of other specialties in between. But when patients are few, specialist care can be hard to find and healthcare resources can be stretched. And if that isn’t challenging enough, the pernicious nature of rare diseases means that patients, caretakers, and clinicians are often working against the clock.

These patients and their families tend to be well informed, proactive, and connected. They often know as much or more about a disease than the people treating them. They welcome outreach from healthcare systems and pharmaceutical companies, so we need to step up and step in. When Roche was in the middle of transforming itself into a truly patient-centered organization, we saw that the nature of the rare-disease community made it an ideal setting for our new way of operating.

McKinsey: How did you and your team make this shift?

Anne Nijs: We started by asking patients what they needed from us and used their responses to shape our new model. The patients highlighted pinch points that we needed to address, such as “every minute counts, so we need you to move faster” or “we want to have holistic conversations.” We changed the way we work to remove barriers and keep a laser focus on bringing solutions to patients. And we launched our Infinity Model—so-called because it recognizes no limits in uncovering patients’ needs and co-creating solutions with them.

Today we have more than 120 colleagues around the world working in agile teams to resolve the particular challenges that arise for patients with rare conditions. These teams look at how and where care can be delivered, examine supply chains and resources, connect up the dots in healthcare systems, and work to understand and provide guidance on reimbursement. More broadly, the teams are on a mission to help people with rare conditions by transforming their lives with meaningful solutions as quickly as possible.

McKinsey: As you started out on this journey, how did you define success?

Anne Nijs: Operating in a fully patient-centric manner demands new ways of working and a fresh understanding of what it takes to create value. Our rare-conditions team needed to define, measure, and track performance in a model geared to transforming patients’ lives. That was a tricky proposition because our existing metrics were defined by product. We had to ask whether traditional key performance indicators—reach, frequency, unaided awareness, intention to prescribe, and so on—still worked in a holistic model focused on community engagement. Often we found these KPIs limiting, given that our aim was to reach beyond the status quo.

Operating in a fully patient-centric manner demands new ways of working and a fresh understanding of what it takes to create value.

Anne Nijs

So we started by looking at our organization and reading academic research, and then we reached out to a range of organizations, from the footwear retailer Zappos to the airline JetBlue, to understand how truly customer-centric enterprises make decisions and evaluate performance. As we learned more, we kept asking ourselves what it means to be in the business of transforming lives. People in the rare-disease community believe their lives will be better tomorrow than they are today, and we define success as knowing that Roche played a part in that process.

McKinsey: What metrics did you use to assess your progress?

Anne Nijs: Our first and foremost priority is to deliver meaningful value for patients. To measure our success, we use customer-satisfaction scores to understand whether the community would recommend Roche as a partner. Alongside that metric, we developed a set of key value indicators for the rare-disease community. These include meaningful solutions—that is, a feeling that Roche reacts to patients’ and caregivers’ needs and helps remove obstacles; ease of working together, a sense of responsiveness; trust, a belief that Roche’s values, such as authenticity, empathy, and trustworthiness, are aligned with those of the community and that Roche has the community’s best interests at heart; and care confidence, the knowledge that Roche enables treatment teams to provide top-quality, comprehensive care to all patients.

Perhaps surprisingly, none of these key value indicators include revenue or volume targets, which are typical for commercial organizations. When we studied other industries, we were inspired by Disney’s purpose: creating the happiest place on Earth. That’s not about selling tickets, merchandise, and streaming subscriptions but about delighting people; it just so happens that the latter accomplishes the former.

At Roche, we talk about the triple bottom line: elevating outcomes for patients, society, and Roche itself. Using key value indictors to provide a framework of signals helps us understand how the rare-disease community experiences working with us and how to create even more value for them.

McKinsey: What practical steps did teams undertake as part of your new approach?

Anne Nijs: Two recent examples come to mind, both driven by patients’ needs when the pandemic disrupted supply chains, healthcare services, and access to healthcare professionals. The first initiative was helping vulnerable patients to access their medicines. We launched a global home-delivery model to ensure that these patients could continue receiving treatment in the safety of their own homes. The second initiative was a partnership with a start-up to provide patients with physio programs via virtual channels.

Whatever we put out in the world needs to provide patients and caretakers with tangible solutions and tools they can use to help overcome the barriers they face. On a broader societal level, Roche has supported patients in organizing communities in places where they didn’t exist, such as the first-ever digital-support network for patients and caretakers in the Middle East.

McKinsey: What kinds of challenges did you face in implementing your new model?

Anne Nijs: Before team members can live and breathe the Infinity Model in the real world, they have to make a big shift in mindset and behaviors, and that isn’t easy. For instance, teams engaging with patients have to move away from a traditional “tell and sell” approach to Infinity’s “listen and learn” approach, which involves partnering with the community to tackle issues in conjunction with them rather than relying on existing solutions.

When we are selecting team members, we look for individuals who have a passion for fulfilling their true potential and purpose. As colleagues start out on their Infinity journey, it’s important they understand why behaviors need to change. And this mindset change is the cornerstone for the success of the Infinity Model.

McKinsey: Do you have any messages for industry peers on journeys like yours?

Anne Nijs: Always have your ear to the ground and keep your community close. Partnerships with external stakeholders can help you solve problems, remove roadblocks, and unlock possibilities you’d never be able to reach on your own. We’re stronger together. I invite our peers to engage with us. We’re happy to share what we’ve learned, and we’re confident we can learn from you.

McKinsey: Roche is two years into its journey. How would you rate your success so far?

Anne Nijs: Our Infinity Model helps us understand the ecosystem more quickly and deeply than a traditional model would, and it yields insights that a classic launch approach would not allow. It has also proved effective in resource allocation and deployment—we have a lean and agile team working in a networked capacity across the globe. Indeed, our new model design has served as an inspiration for the broader organizational transformation at Roche.

What’s more, our team members are experiencing personal benefits from the new model. Our obsession with what matters most to patients unleashes new thinking and gives colleagues unprecedented freedom to imagine and experiment. The innovation that flows from this sustains our financial model and ensures that we have the resources to keep doing the right thing for patients. That takes us back to the concept of the triple bottom line: making our organization competitive, successful, and fit for the future to enable better outcomes for patients with rare conditions and for society.

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