Anne Nijs

How Roche is redefining its approach in rare diseases

by Artur Olesch
7,5 minute read

“The end goal shouldn’t be determined by how many medicines we can sell, but by the value we create,” says Anne Nijs, Rare Conditions Transformation Leader at Roche. In an interview for The Sidebar, she unveils how the pharmaceutical company builds vital partnerships with patient communities and individuals.

What is the vision of Roche for patient- and outcomes-oriented, connected healthcare?

Simply put, our vision is to deliver better outcomes and bring more value to help transform the lives of people with rare conditions. For two years, we have been challenging the status quo and tapping into what ‘more value’ really means in practice. We continue to push ourselves to think bigger and be better, approaching situations with curiosity and the intent to learn and evolve.

Many patients with rare conditions remain undiagnosed. It leads to delayed therapy and sometimes also worse treatment outcomes. What should be done to change it?

A rare condition patient community is like no other. They are generally extremely well-informed, proactive, and connected, so they often know as much or more than the people treating them.

The nature of these communities provides an ideal setting to operate in a fully community-centric way.

By working with an entrepreneurial approach that enables better insights from patients, we can fuel faster innovation, encourage better recruitment for clinical trials, and encourage patient participation and involvement from the very beginning, at the stage of molecule development—this ensures we are creating treatments and solutions catered to our patients’ needs in a timely manner.

Do you think it is the role of pharma companies to ‘create treatments’ tailored to patients with rare conditions? Wouldn’t it be better to enhance the cooperation with doctors to create a new value chain? They are closer to the patient.

Ultimately, the responsibility lies with Roche to create innovative treatments for people with rare conditions through excellence in science—innovation is at the very core of what we do. It is also important how we partner with all the players in the ecosystem. Strong relationships with our partners enable us to collectively create a better future for the patients and their loved ones.

Could you please share some ideas on creating a new culture of partnership in healthcare so that patients can become co-creators of their health?

For my team at Roche, we have introduced new external-facing roles—our Rare Conditions Partners (RCPs)—dedicated to having direct contact with external communities and ecosystems. This means that they are embedded in the disease areas that they work in; their attention is solely dedicated to understanding the ecosystem in their local country. They are the primary point of contact within their area—there are over 120 of them dotted all over the globe and working in a networked capacity as an agile team.

Additionally, they have the support of their colleagues or Enabling Team, who are part of the Global Network. This networked way of working forms a strong foundation that enables them to be more solutions-focused as a partner, meaning they can make decisions quicker, be more self-driven, empowered, and have more autonomy.

We’re essentially creating a culture that allows the team to move faster so that we can bring more value to patients and transform their lives faster, therefore building solid partnerships in the rare conditions space.

Which factors will be critical to facilitate the shift of pharma companies, becoming more present in the patient journey?

Forming connections with individuals, all unified by one goal, will help us to lead based on one vision. My Rare Conditions Team has been experimenting with achieving this by piloting our new business model, called Infinity. It has a unique structure of incorporating on-the-ground partners (RCPs), ensuring we are maintaining an external focus, and changing how we engage with patients and stakeholders to use insights from them and co-create solutions together.

As mentioned, our vision is to bring more value to people with rare conditions faster to help transform their lives. To do this, we have to be embedded ourselves in the tight-knit rare conditions communities and need to engage with patients more holistically.

We can only be part of the ecosystem if we move faster and work in a more agile manner—this is exactly what the autonomous structure and primary point of contact approach of the Infinity model enable us to do. The RCPs are the ones co-creating solutions with the community. Behind them is the Enabling Team, providing the backbone support they need. The model simplifies and streamlines how we interact with everyone, but more importantly, it is a seamless, smoother experience for members of the ecosystem who engage with us.

What hurdles do you see on the way to change the paradigm of medicines-oriented business models towards patient-centricity you’ve described?

I believe mindset shift is very critical. We’re asking colleagues with years, or even decades, of industry experience to move away from the familiar, ‘tell and sell’ method. As partnerships become essential in how we operate, we need to move towards the ‘listen and learn, partner and solve’ model—we don’t know everything, and we won’t have all the answers. As a team, we must be comfortable with this as it will require behavioral change as well.

Could you please give some examples of how the close cooperation with communities helped Roche to meet patients’ needs?

Our RCPs have done some incredible work all over the world. One example is when one of the RCPs in Canada worked closely with her counterpart in the Caribbean to bring much-needed Huntington’s Disease (HD) resources, materials, and education needed to one of the countries. As she is an integral part of the community, she was able to get the required support quickly, so she could navigate around the complexities to help her colleague. Another one is our RCP in the Middle East, who started a grassroots community for spinal muscular atrophy (SMA) patients and their carers, fostering connections across the region.

On a broader level and against the backdrop of the pandemic, we’ve increased our partnerships to provide patients with practical solutions. For example, our partnership with a startup to provide patients with virtual physio programs—many of these types of services have been or were disrupted, so it’s essential that whatever solution we offer can be tangibly used by patients, day in and day out.

The pandemic has encouraged all of us to be bolder than ever! For example, we launched a home delivery model so that patients with rare conditions could continue receiving their treatment in their own homes. Due to the disruption of services in healthcare systems—such as transport and logistics—it was important that they could still access their usual treatment and care, so we moved quickly to make this a reality for patients across the world.

How can pharma companies harness the potential of digitalization to transform the transactional model still present in the industry?

We find that our patients and customers are now more in tune with their health, and their healthcare journey is very much in their own hands. As pharma companies, we need to adapt. This has been manifesting for some time. However, since the pandemic, it has surged massively, leading the entire industry to undergo substantial transformational changes.

The rise in digital healthcare and the accelerated use of devices—such as telehealth and digital monitoring—has only made initiating connections with our customers and patients easier, ensuring we are present at every step of their healthcare journey. Our next stop is thinking about how we continue to leverage these new tools to support patients’ daily lives, tailoring solutions to fit their individual preferences.

There is still a lot to learn, but I have no doubt that digital health will open new and exciting realms between our customers and us.

You’ve been in the pharma industry for 30 years. What have you learned that should be considered in order to build effective, continuous, and citizen-oriented healthcare?

For me, it’s all about building a strong, diverse network of people who are curious, passionate, and determined to improve outcomes for patients. By working together, co-creating solutions with customers and stakeholders, we will be able to grow, deliver greater value and make a lasting impact in our ecosystem.

Please complete the sentence: In the future, pharma companies…

…will welcome true partnerships as a new standard across healthcare. I hope one day it’ll be a natural way of life and together, with our patients and customers at the forefront. We continue to move mountains, reinvent, and recreate new and exciting realms in the world of healthcare.