At Galapagos, our ambition is to embed patient engagement throughout the medicine lifecycle. Today, patient engagement is not only ‘’the right thing to do’’, but we also need to ensure that, as a company developing medicines, ‘’we do it right’’. I strongly believe that it also is a mindset, and ultimately a key part of everyone’s job in the healthcare sector. That’s why I’m keen to share our Patient Partnership Charter journey with you.
Written by Marina Sardone (Patient Advocacy Lead)
Patients are the experts of their disease. They live with it every day and experience the impact it has on not only themselves, but on their families and friends too. They play a key role in helping us to better understand their unique needs, priorities, and perspectives so that we can be more successful in our endeavors to develop medicines that could make a positive difference for them. To get to that level of understanding, we are engaging with the patient community in trust-based, long-lasting.
Aligned approach to patient engagement across the company
Let’s rewind to 2020, soon after I started at Galapagos, when I joined forces with other key representatives across the company to set up and drive the Patient Organizations Engagement Team (POET). Our goal: to define the company’s vision and roadmap towards systematic patient engagement.
Subsequently, 2021 was a milestone year for our patient engagement efforts. We co-developed our Patient Partnership Charter with patient representatives and patient advocates to define our long-term ambition: partnering with the patient community while capturing our commitments and the principles driving our collaboration with patients and patient organizations. Discover the Charter here.
Co-creation, more than a buzzword
We reached out to independent patient advisors and patient organisations for their input and feedback back in 2020. From the very beginning, we decided to lead by example and co-develop it with the patient community. It is fair to say that co-creation was key to ensure that our Patient Partnership Charter was fit for purpose.
We partnered with 3 independent patient experts and 7 patient organization representatives to help us plan our first-ever patient advisory board. We consulted the group to understand:
- Their perspective on leading principles to govern a relationship between patient organizations and pharmaceutical companies, as well as on good engagement practices and areas for improvement.
- Current areas of collaboration between patient organizations and pharmaceutical companies, and areas where they would like to increase and improve collaboration.
- Their views on content and structure of the Charter.
Their feedback was used to guide preparation and discussions of our first-ever virtual Advisory Board, in March 2021, in which all external advisors participated, alongside Galapagos representatives including our Chief Medical Officer, Walid Abi-Saab. We discussed the advisors’ feedback on the Galapagos’ approach to patient partnerships, the key content to be covered in the Charter and their recommendations on governing principles and practices for optimal partnerships. These insights formed the basis of the first draft of our Patient Partnership Charter.
The Charter is the embodiment of what Galapagos wants patient engagement to represent – working with patients, for patients to pursue better patient outcomes. With the Charter as our benchmark, we are proud to have informed, trusted collaborations with patients and their representatives throughout the medicine development process and beyond.
Fostering a culture of patient engagement beyond the Charter
The Charter is only the first step towards embedding patient engagement systematically in our work. We are working on further raising awareness for patient engagement internally to ensure all employees, on all levels, have the information and structure they need to build these trusted partnerships.
Following the finalization of the Charter and building on the great collaboration with our Advisory Board members, we wanted to ensure continuity of the work done. Therefore, we established a Patient Engagement Council, made up of key Galapagos employees as well as all partners involved in the development of the Charter. This Council primarily acts as a consultative body, advising Galapagos on patient engagement-related topics, as well as a knowledge exchange platform between Galapagos and the patient community.
Throughout the process, three main elements guaranteed the success of the collaboration with our advisors:
- Early engagement: we involved our partners early in the process of the development of our charter, ensuring co-creation and, therefore, alignment with the patient community’s expectations.
- Giving everyone a voice: we valued everyone’s expertise and knowledge, ensuring all partners had equal opportunity to contribute, and bringing back the feedback of everyone at the table.
- Transparency and honesty: we disclosed all relevant information about the project and kept all partners up to date about the project status and next steps.
I hope this case study and our learnings can inspire colleagues in the pharma/biotech sector who also work around patient engagement. Questions? Remarks? Thoughts? Please do not hesitate to connect with me!
About Marina Sardone
Hi, I’m Marina Sardone and I lead the Patient Advocacy function at Galapagos. My focus is working as a change agent, to help the company move along a cultural shift towards systematic patient engagement. The aim is to embed patient engagement in our ways of working, making sure that we are incorporating the patient perspective in everything we do. To help colleagues being mode engaged with the patient community, I am also leading the Patient Organizations Engagement Team (POET), whose main objective is to oversee and coordinate patient engagement activities across all departments to ultimately ensure consistency and alignment with the principles captured by our Patient Partnership Charter.