Words by Louise Rogers
The term patient centricity has seen many variations in both name and definition over the years. Lode Dewulf, Chief Patient Officer, Servier, tackles this ambiguity at this year’s eyeforpharma Patient Summit in London. “Over the years, whatever term we have used to describe patient-centricity, the one thing all the names and definitions have in common is that it is not the language used by the patients. When I explained to individuals outside of the industry ‘we used to work for patients – now we work with patients, for patients’, they got it! Patient centricity is all about the ‘with’!”
Although the need to engage and collaborate with patients is hardly a revelation, with a whole 2 days at the 2018 Patient Summit dedicated to the topic, it clearly goes to show that this is an area pharma needs advice in. Daniel De Schryver, Patient Engagement and Advocacy Lead, EMEA, Janssen, echoes Dewulf’s sentiment: “We have been very good at doing things for patients, so now let’s get good at doing it with them.”
We used to work for patients – now we work with patients, for patients
Ipsen’s LivingWithNets initiative is a prime example of pharma working with patients. Ronny Allan, Patient Advocate, who was involved in the co-creation of Ipsen’s website aimed at informing and supporting individuals living with neuroendocrine tumours, explains: “We patients were involved in designing every aspect of the website, from conception through to launch. We were listened to; no idea was dismissed. All input came from the patients!” he adds.
Beside Allan, Isabelle Bocher-Pianka, Chief Patient Officer, Ipsen, poses the question of how to achieve this type of collaboration: “So what are the fundamental things that need to happen for us to work more dynamically with patients?” She goes on to explain from a strategy perspective, the critical transformation needing to happen with regard to culture, mindset, and process.
“The first important element is taking time to train your management. It is so meaningful for employees to hear about the why and the importance of working with patients. They have to have the confidence to act on it and work with them. Secondly, managers need to identify where capability is needed; how do we incorporate patient centricity into the reality of our daily jobs? Finally, management need to be actively listening to what patients are saying and measuring success from a patient perspective. The only way we are going to accelerate as employees is by having the support of our managers to initiate these actions.”
Bocher-Pianka’s words suggest that in order to succeed in patient-centricity and obtain competitive advantage, companies must learn to adopt a new culture. Dewulf reflects: “The biggest challenge for patient engagement is culture. In pharma we are control freaks and perfectionists. But when it comes to innovation and patient involvement, we have to have courage, and this often means moving before we are perfect.”
Several years ago, Sanofi Genzyme began the ‘The World vs MS (multiple sclerosis)’ initiative, consisting of a steering committee including patients and HCPs. Their goal: finding a solution to an unmet need, publicly voted on by the patients. ‘The World vs MS’ was initiated without a concrete plan, where Sanofi would have to learn on the go what worked and what didn’t work, and the direction would be determined by patient input. “Now in its third year, the initiative has shown great success, most likely due to this active engagement from patients, who were from all across Europe”, voices Trishna Bharadia, patient advocate.
Partnerships need to be founded on the intention of longevity and not just established to adhere to the status quo
Kathy Oliver, Co-Director, International Brain Tumour Alliance highlights an important lesson from Sanofi’s initiative with the Dogs Trust’s slogan: “A dog is for life, not just for Christmas.” Partnerships need to be founded on the intention of longevity and not just established to adhere to the status quo. As is apparent from these successful collaborations, pharma needs to embark on a journey alongside patients, accompanied by courage and a specific cultural mindset, in order to reach their patient-centric destination.