Pharma Top Talent: September 2020 newsletter

Q&A with Anne Nijs (Rare Conditions Transformation Leader at Roche)


Introductory summary:


As the Rare Conditions Transformation Leader at Roche, Anne Nijs is spearheading organisational change by using the company’s first ever patient-centred operational model called INFINITY. Anne’s drive in transforming the way the company works in the area of rare conditions stems from a personal childhood experience as her brother battled with Cystic Fibrosis. Growing up, she had to navigate the complex carer journey first-hand giving her unique perspective in her position as a leader. Whether it’s moving beyond pricing of medicines, or collecting insights to produce tailored-innovative solutions for patients, Anne and her team are demonstrating how embracing agile ways of working and cross-border collaborations can transform how we operate as an industry for the better and make history for patients living with a Rare Condition.


‘’It’s about enabling these patients to live their lives to the fullest – as human beings – not just as patients.’’

– Anne Nijs



What does your current role as the Transformation Lead in Rare Conditions entail?

It is my responsibility to inspire organisational change and collaborative thinking across my team. I realised very early on in my own personal journey that transformation on this scale cannot happen in silos and in order to succeed we are all required to work together, encourage curiosity within ourselves, learn from each other’s experiences. As a leader, it is my role to create an environment where teams can be more entrepreneurial, more flexible, self-managed, self-directed and of course, create a safe and open space for us all to collaborate and experiment together.

What prompted you to want to embark on this journey?

My journey started when I was just seven years old when my brother was diagnosed with Cystic Fibrosis. My whole life was spent in hospitals and witnessing the impact these types of diseases can have on both the patient and their loved ones. I was also able to see what the patient wanted – to live a normal life. I knew instantly I wanted to help others like my brother and ever since, I have been fighting for those unable to fight for themselves. I was determined to create a better and faster outcome for them, which is not only related to their treatment but also their overall care, and to their lives. It is this where I’ve found true meaning within my role and feel proud every day when I see the hugely positive impact we’re making – something I know my brother would be proud of too.


How will this new approach help patients?

We recognised very early on that people with rare conditions are unlike any other groups of patients. As their disorders are so uncommon, patient communities form close-knit groups with a deep knowledge and understanding of their respective conditions. We knew that in order to help we needed to partner with them throughout every step in their journey. Our new two-leveled operating model, INFINITY, allows us to do exactly that. With INFINITY we introduced a new approach which allows us to integrate within the ecosystem to truly understand their daily needs and use these insights to provide tailored solutions for each patient group. We have dedicated ‘Rare Conditions Partners’ on the ground acting as key points of contacts with our customers. Whether it’s through helping patients get to their hospital appointment, having easier access to their medication or even providing a new wheelchair, support systems or counseling – we will help in every possible way we can.


What are the ways in which your efforts could transform the pharmaceutical industry?

The essence is that we hear it from the customers themselves and co-create the solution with them. By also responding to the changing pharmaceutical environment and using the resources which are naturally on the rise e.g. digital, we’ll be able to bring people from different sectors, countries and societies closer together, connecting their individual strengths to create ground-breaking solutions for our patients.


What does it mean to be truly innovative? How can people within this industry drive innovation?

For me, innovation is strongly linked to agility. I often ask my team; are we being bold enough? Are we being fast enough? Are we thinking differently to how we would traditionally approach things? It’s okay to experiment and try new things.


What are some ways in which Roche is changing and transforming their business in Rare Conditions? Why is it important to make transformations succeed at this scale?

We’re dedicated to becoming more nimble and agile in how we approach situations. As a 120+-year-old biotech company with nearly 94,000 employees in more than 100 countries, we need to make the agility mindset personal for every single employee. This means shifting away from a hierarchical structure to one that gives people the space to support and define what an agility mindset means to them. As a result, you have an organization that enables highly empowered employees to innovate, collaborate and come up with solutions that create value. 


There’s evidence of this with some of the great things we’ve achieved for our patients; for example, new partnerships have meant that in Trinidad, a country with limited resources, clinics and physicians to treat Huntington’s patients, now have access to the materials they need to not only enable them to manage their patients but also have access to training and resources beyond country borders, helping them better understand the disease and its impact on their community.


We were also able to support the experimentation of repurposing existing equipment used in the 60’s in France for scoliosis and tailor it to help children living longer with Spinal Muscular Atrophy (a physically debilitating disease). Through funded training and collaboration, the treatment is also being trialed in children living in Canada.


What role does leadership play when driving transformation?

The ability to empower change without directly controlling it. I encourage my team to work in a self-directed and self-managed way so that they have the freedom to respond to the needs of customers and patients as they see fit.


How do you inspire a culture of purpose and patient-centricity within Roche?

I work very closely with my team to ensure we’re continuing to push ourselves to think bigger and be better. We approach situations with curiosity and the intent to learn and evolve. By embracing experimentation, failures and sharing our experiences broadly within Roche, we have been able to kick-start incredible momentum to support this transformation and truly focus on patient-centricity and the needs of broader stakeholders in the rare conditions ecosystem.


Everybody is speaking about patient centricity at the moment. What is Roche doing differently and what advice would you give to companies who are trying to make that shift? 

We are moving away from traditional thinking – something that I encourage everyone to do. Instead of letting revenue and sales define our success, we’re becoming more agile, more experimental and open to learning as we go. We very much see our transformation as an ongoing experiment. We know we don’t have all the answers; however, we’re dedicated to solving as we go.


What have been the biggest challenges you’ve faced during this transformation and how did you manage them effectively?

For me, the biggest challenge has been trying to not revert to the old ways of working. Change is uncomfortable for all, and it’s very easy to carry on with what we’re used to. However, it’s with embracing this change that we can reach new heights that would’ve seemed impossible.

You have 25+ years’ experience in the industry, worked in four continents with a few multinational pharma companies: what’s been the most important lesson you’ve learnt so far about:

  1. The industry

  2. People

  3. Yourself


The industry – this is constantly changing and evolving and it’s up to us to evolve with it. The world is unpredictable so it’s important we’re prepared to respond to changes that will not only support our growth but bring more value to our patients quicker.


The people – there is nothing more important than a good relationship with both internal and external stakeholders. It is through this trust that we can create revolutionary outcomes for our patients.


Myself – I never let my core goal escape my daily projects. Everything I do, I have our North Star in mind – to bring more value to patients faster. I learnt to regularly reflect this on my journey to help keep me in check!

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