PFMD member Laure Delbecque, Associate Director, Clinical Outcomes Assessment ＆ Patient Reported Outcomes, Pharmerit International shares her views on how patient attitudes towards medicines development are changing:
Patients today have a lot more knowledge, they have access to the internet and to a lot of information. Many of them really understand the drug development process and they want to contribute to that process. The question is ‘are other stakeholders, ready or willing to give patients the place they should have?
We conduct a lot of interviews with patients and caregivers and what we often hear is that what might be a priority for them differs from what matters to clinicians. The only way we can make sure that what we measure in clinical trials is important to patients is to ask them what is important to them. That has to be the starting point for every clinical trial.”
It is also essential to work with decision makers who are currently not engaging with patients to identify what their needs are and to identify what the barriers are to that engagement.
SYNaPsE, the PFMD global patient engagement mapping and networking tool is excellent for increasing awareness. Patient engagement can be quite a vague concept, people understand the need to engage patients but might not know how to practically do it. The mapping tool gives people ideas and raises awareness about current patient engagement initiatives and practices.
My ultimate goal and vision for meaningful patient engagement is that we arrive at a point where patient engagement is a normal part of the drug development process. In the same way that assessment of a clinical trial involves assessing safety and efficacy, patient engagement must become a common and standard practice.
PFMD welcomes membership from institutions, organisations and enterprises that support a better future for patients. Join us and help shape the patient engagement landscape.