The business mantra you hear more than ever these days is customer-centricity, the philosophy of putting customers at the core of every business model.
Many companies want to embrace it, but shifting your business model may not be enough to get you to true customer-centricity. Achieving it requires a shift not in your model but in your mindset: having the confidence to understand that the ideal outcome is not solely business growth but customer happiness—while recognizing that if done correctly, the former follows the latter, making the shift worthwhile on all fronts.
The pharmaceutical sector is a prime example of where a change in mindset to true customer-centricity—putting patients who need treatment at the center of the health care ecosystem, rather than treating them as components of transactional processes—can change outcomes and dramatically improve individuals’ lives.
The Infinity Model, a pilot program from Roche Pharmaceuticals, may hold the key to a customer-centric philosophy that, regardless of sector, focuses entirely on customer outcomes. Its most visible difference from standard customer-centricity is the architecture of its business-customer relationship—not a traditional hierarchy but one that embeds the business directly within individuals’ self-organized networks.
“The model is not important. It’s the approach that’s so different from a traditional structure,” says Anne Nijs, Rare Conditions Transformation Leader at Roche, who pioneered the Infinity Model. “It’s purpose-driven. It empowers patients by changing how we engage with them and their stakeholders. If we do it right, we will deliver on a triple bottom line: elevating outcomes first for patients, then society, and ultimately for Roche itself.”
The Infinity Model has been organized around reinventing care for people with rare conditions. These individuals face daunting challenges. Beyond the physical, emotional, mental, and financial demands of living with disease, these patients also routinely suffer from a lack of real-time on-the-ground support from the health care system they depend on.
A rare disease affects fewer than one in 2,000 people, by the European Union’s definition, and the pharmaceutical industry’s traditional command-and-control business model has not always rewarded investments in research and development for therapies that benefit such small populations. Only 200 of the 7,000 known rare diseases have treatments, and an ecosystem of care that supports patient needs beyond medicine is often overlooked.
Patients with rare life-threatening conditions need more than medicine alone. They need awareness of clinical trials and opportunities to participate in them; more voices to advocate for affordable treatment; and skilled support teams that can help them overcome the many life challenges that rare diseases pose, including addressing emotional and financial support for themselves and their families.
One disruptive innovation toward a more holistic patient-centric ecosystem of care is Roche’s Rare Conditions Partners (RCP): liaisons sourced and employed by Roche who have a laser focus on addressing patients’ needs. RCPs embed themselves in their patients’ communities—they seamlessly and meaningfully team up patients with health care providers, patient advocacy groups, and care networks within Roche—in a proactive environment that empowers all involved to co-create solutions.
Freed from the restrictions of hierarchies, bureaucracy, and traditional transactional business models, more than 120 RCPs worldwide provide a wide range of support, helping not just to source suitable drug trials but also to co-create creative strategies to assist patients as their needs—that often have nothing to do with medicines—evolve. By identifying pain points and finding the right partners in industries beyond health care to solve them, they inspire the community to find new and disruptive solutions. Their presence always keeps biopharma’s focus on the patients and their networks.
Beyond connecting biopharma to patient communities, RCPs connect patient communities to one another, building powerful and agile networks unlimited by physical location—an especially critical link during the pandemic, and one that will be lasting and equally potent in a post-pandemic world. Some of the ways RCPs have put ideas into action stem from repurposing existing tools for other uses, to building digital infrastructure.
Because no health clinics in Trinidad specialize in treating Huntington’s disease, a rare inherited illness that causes the degeneration of nerve cells in the brain, one local RCP strengthened the support networks of Huntington’s patients with virtual physiotherapy by connecting their health care teams with teams in Canada who had identified a similar need.
One RCP in the Middle East noted the isolation of individuals with spinal muscular atrophy (SMA), a genetic disease affecting the central and peripheral nervous systems and voluntary muscle movement. The RCP used digital tools to connect these patients and their care networks in an online support community, tapping insights that led Roche to build SMA My Way, a site that helps patients and their families find information, seek support, and swap advice.
As the previous examples show, not all RCP solutions depend on advanced technology or medicine; some call only for empathy and ingenuity. In Canada, the innovative idea to repurpose back braces, used decades earlier for scoliosis patients in France, became a holistic solution that gave teens and young adults with SMA immediate, meaningful relief from pain—no research and development funding necessary.
Nijs recruits and hires RCPs based on their level of passion and drive for helping others, paired with their experience. The sense of purpose that comes from working in genuinely collaborative partnerships attracts passionate employees who drive an experimental, entrepreneurial approach to patient-centric care, she says.
A Shared Sense of Purpose
For Nijs, the Infinity Model has had varying sources of inspiration. One was her childhood experience of the care system that was available to a loved one who suffered from cystic fibrosis, which left her determined to give patients better lives through better holistic care.
Another is the study of unusual customer-centric business models in Frederic Laloux’s Reinventing Organizations. Laloux, Nijs says, showed that “businesses that took a truly customer-centric approach and started to measure and extend that customer-centricity, didn’t measure revenues immediately, but they clearly demonstrated that if they were fundamentally customer-centric, their financial performance would be even better.”
To that end, an entrepreneurial on-the-ground approach to patient care in rare-disease communities may fuel faster innovation, resulting in improved recruiting for clinical trials, better insights from patients, and more effective hiring and retention of talented employees.
Of course, this approach to patient-centricity is a biopharma-specific version of customer-centricity that could have broad applications across sectors for innovative companies pioneering a degree of service that values customer results over revenue—and ultimately elevates both.
“Lots of elements of the Infinity Model are being adopted to growth and transformation in commercial organizations,” Nijs says. “It’s happening as we speak. The most important element is that, ultimately, the patients are feeling the difference. I spoke with one of our partners in Asia-Pacific who was visibly moved as she said, ‘I hope this is going to continue because this is the first time I really felt heard.’ It was incredible to hear that.”
Learn more about how Roche is transforming rare condition patients’ lives beyond the lab.