Geraint Thomas, Patient Affairs Director at Amgen Europe, explains the series of challenges linked to patient engagement that the industry is currently facing:

“This is a huge multi-stakeholder complex environment that we are working in and therefore the challenges are at every step of the way.”

Geraint applies different lenses to the current situation, from the perspective of patients, regulators, as well as that of industry, in order to talk us through the potential barriers that occur at every step of the drug development process.

  1. Lack of direct contact is a challenge

Geraint says that it is very difficult for us to engage the right patient organisations or the patients within those patients organisations,” as “in Europe, as industry we are not allowed to interact directly with individual patients.”

  1. The lack of follow up with patients

In Geraint’s view, companies should “be receptive and ready to act on the information they are receiving.” This is because “there is nothing more frustrating, from a patient’s perspective, than when we don’t go back to them and follow up to say: This is what we did when we heard from you.

  1. The mismatch between the unmet needs of the patients and the regulators’ perspective.

Geraint points out that “from a patient’s perspective, maybe survival isn’t the main priority, maybe it’s the quality of life aspect that’s more important to them.”

Watch the video interview below to find out what the other challenges to patient engagement are and what the potential solutions could be:

About PFMD: The Patient Focused Medicines Development (PFMD) group, established in 2015, is an independent multinational coalition, managed in collaboration with The Synergist. Its goal is to bring together initiatives and best practices that integrate the voice of the patient throughout the lifecycle of medicines development, thereby speeding up the creation and implementation of an effective, globally standardized framework. Find out more about the initiative: