Gathering insights to improve clinical trials direction study patient advisory board

At Ipsen, we strive to improve the experiences of those participating in our clinical trials and do this by capturing insights from people living with the conditions we are investigating to help us to improve how we run our studies.  

We held a patient advisory board with people living with spasticity – a condition that can cause increased muscle tension, loss of motor control, and abnormal body posture – and caregivers to improve the design, materials and logistics of the DIRECTION study, which evaluates the efficacy of a treatment for spasticity in the upper part of the arm.  

The patient advisory board helped us to understand their experience of living with spasticity, needs and expectations from participation in the DIRECTION study, as well as potential challenges specific to the study and solutions to address them. Key insights into how Ipsen could improve the patient experience during the study included: 

• The inclusion of a plain language summary in the informed consent form, detailing what participants can expect during the study 
• Logistical support, such as scheduling appointments in advance and organizing transport 
• Clearer communication between healthcare professionals and participants  

These insights have been integrated into the study process and patient-facing materials, and Ipsen is now looking into ways that it can provide interim study progress updates with participants to keep them informed.