At Galapagos, we’ve always been committed to pioneering breakthroughs that improve patients’ lives. But developing innovative treatments is only part of the story. Equally important is how we partner with patients to understand their experiences, challenges, and needs. This collaboration shapes the way we aim to work at every stage of medicines development, from research to delivery. A cornerstone of this commitment is our Patient Engagement Council (PEC), a consultative body that ensures the patient’s perspective helps to shape our strategies and decisions.
In this article, we’ll explore why the Patient Engagement Council was established, how it’s driving real, actionable results, and the critical role it plays in our patient engagement efforts. You’ll also hear about the tangible changes it’s made across our organization and get a sneak peek into our latest PEC meeting, where patients, advisors, and Galapagos colleagues came together to make their mark.
The Galapagos Patient Engagement Council members (from left to right): Mitchell da Silva (EUPATI Belgium), Lynn Wilson (Myositis Support and Understanding), Elfriede Wijsma (Lupus Europe), Nicholas Brooke (Patient Focused Medicines Development), James Caldwell (Cancer Patients Europe), Nicola Bedlington (PEC co-chair), and Carly Harrington (CLL Society US, not in the picture).
Why the PEC Matters
The PEC plays a vital role in shaping our patient engagement efforts. As outlined in our Patient Partnership Charter, it’s not just about listening to patient feedback, but ensuring that their insights lead to real, tangible change by effective partnerships. The Council provides Galapagos with invaluable expertise on patient-related topics, in the first instance, , by guiding the company’s transformation process to become a truly patient focused company by 2028. The PEC has already informed a number of strategies across our global departments, including Clinical Operations and Compliance & Ethics.
Mitchell da Silva (EUPATI Belgium and PEC member): “The Patient Charter outlines how and why Galapagos should work with a specific patient community. What is the value, and how does this contribute to the overall mission?”
By bringing together diverse perspectives, the PEC ensures that the patient experience is front and center at every stage of our work, from research and development to ultimately contributing to the delivery of innovative therapies.
Making Patient Voices Heard – and Acted Upon
One of the standout outcomes from the latest PEC meeting was its direct contribution to creating a indication-specific patient advisory board. This to obtain specific advice from people faced with a particular condition. The PEC members provided invaluable recommendations on the set-up, composition and governance of such advisory board, including how to address diversity.
Previously, the PEC has provided input in tangible processes that make a true difference for patients, such as sharing randomization codes with trial participants, input in patient facing communications such as websites and letters, as well as a ‘patients first’ job aid for Galapagos staff, helping decision making with the patient in mind as the ultimate goal .
Concrete Results, Not Just Conversations
One of the main criticisms on Patient Engagement in the pharmaceutical sector is that it remains a little too fluffy and abstract and not actionable. Worse even, when it is seen as window-dressing.
We ourselves have received feedback suggesting that the results of PEC meetings can appear “fluffy” or difficult to quantify too. However, the reality is far from that. Our PEC meetings consistently lead to actionable outcomes that are tracked and measured across our global departments. From improving our medical information materials to embedding patient perspectives into our clinical trials.
Nicola Bedlington (PEC co-chair): “Galapagos seeks insights, but also develops very tangible tools with the Patient Engagement Council, like a job aid helping Galapagos colleagues to implement the Patient Charter in their work.”
Every time we consult patients to inform a specific activity (like for instance a protocol or informed consent form), we track the recommendations received until it’s implementation. The final step is to sit together with the patients who provided input, in order to inform them about what and what could not be taken on board.. We learned that by being open and transparent we build trust, with an understanding that not every piece of advice could be taken into account for a good reason.
We pioneer for patients, with patients. Meaning: we must adapt, grow, and evolve along with the needs of those we serve, with those we serve. With the PEC at the forefront, we’re confident that our patient engagement efforts will continue to lead to innovative solutions that truly make a difference.
A Glimpse Into the PEC Meeting – Watch the Video Below
We’re excited to share a video capturing comments from some of our PEC members, right after the latest PEC meeting. So make sure to watch the interviews below! You’ll hear from the patient advisors, organization representatives, and Galapagos colleagues who participate in this invaluable collaboration. Our main question for them was: what is the real impact the PEC is having on our work?
A Glimpse Into the PEC Meeting
Meet some of our Patient Engagement Council (PEC) members and learn about the concrete actions they are driving – together with Galapagos – to benefit patients
Pioneering for patients, with patients
Discover our Patients & Carers section
At Galapagos, we do more than just developing treatments. We’re building relationships with patients, ensuring their perspectives guide our journey. To learn more about our commitment to patient partnership, explore our Patients & Carers section.