It all starts with listening to patients

Patients are more empowered than ever and the patient voice is increasingly heard by decision makers in regulatory and care pathways.

The perception of patient care has changed. It is no longer about focusing on single aspects, but about taking care of the person as a whole, and understanding all the factors that play a role in improving their quality of life.

At Ipsen we welcome this trend. For a global biopharmaceutical company such as ours, there is no doubt: we have a responsibility to undertake a cultural and organisational transformation to make patients and patient organisations our partners and include their insights in our work along the entire value chain, from research to drug commercialisation. And it all starts by listening to patients.
In practice, patient centricity means working with patients on the issues that matter to them. The key is ensuring that our employees understand the value of listening directly to patients and feel confident to transform those insights into projects that are rooted in reality. This shift sounds simple, but it is a small revolution.

In clinical trials, we have started to involve patients in the design of phase III protocols by building patient boards to provide this valuable input. By doing so, we can challenge current endpoints, create quality of life measures which are relevant to patients and even think about new ways to collate data that make it easier for patients to participate. This is a new way of thinking, in which patients can bring expert opinions and contest preconceived ideas.

When it comes to treatment adherence, patient insights are just as valuable. We integrate their opinions into pilot projects, for example when developing disease education tools that can be shared by healthcare professionals with their respective patients. Listening to patients is essential to find ways to bring solutions that meet needs beyond the treatment.

Among various initiatives, we are especially proud of “Living with NETs” (, a website we recently co-developed with patients for the NETs community (neuroendocrine tumours). We learned from patients that it can take seven or eight years before they are diagnosed. They often have a mix of symptoms that make it difficult to diagnose and, as a consequence, valuable time is wasted until they are eventually referred to an endocrinologist. The Living with NETs website helps to identify early symptoms and provides a full guide to living with the disease including advice from both patients and doctors. To reach this outcome, we worked extensively with patients and followed their journey from pre-diagnosis all the way to a life with NETs.

To succeed and prepare ourselves for tomorrow’s opportunities we need to break silos and collaborate with patient organisations, carers, physicians and even other pharmaceutical companies. Only a collective approach can lead to better patient outcomes and create shared value.

We are at the start, but are ambitious to move forward with this transformation because we believe that together we can shape the health of tomorrow for the better. We are ready to listen and patients are the best teachers in this new way of working: with patients, for patients.

Isabelle Bocher-Pianka is chief patient affairs officer at Ipsen