PFMD member Anna Truppel Hartman, Head of Patient Engagement, F. Hoffmann – La Roche talks about the importance of understanding what patients need for effective patient engagement and co-creation in medicines development:

“We need to start with understanding the needs of patients and recognising that not all patients are the same. We have to identify what patients require in terms of communication and listen to what they want from the pharma industry and other healthcare stakeholders. If we don’t understand this then we will not be able to create programmes or communicate in ways that are relevant to patients. We must always start with a needs assessment followed by co-creation.”

“One of the main challenges is to make sure that there is a truly representative volume of information, as every patient and geographical area is different. Understanding who to ask and how many patients to ask to really have a representative amount of information available is very important.”

“Another challenge to effective patient engagement and co-creation is that internally within organisations there needs to be an awareness of the need to integrate patient engagement before initiating activity.”

“In order to achieve true co-creation, you should never have a very concrete solution or outcome in in mind.  If you have a solution already in mind before you start, you are not really doing co-creation. Co-creation is about ending up where the solution really makes the most sense not at a pre-conceived notion.”

“SYNaPsE, the PFMD global patient engagement mapping and networking tool has a really positive influence on my work because it allows me to get ideas and inspiration from existing initiatives through different stakeholder perspectives. It is an excellent resource.”

“Every stakeholder has a voice and we should be equal partners in order to really improve patient care. No stakeholder is more important than another but the patient must always be in the centre.”

“My ultimate goal and vision for meaningful patient engagement is the systematic integration of patients in medicines development. I don’t think this is a distant ideal I believe we are going to make it happen.

PFMD welcomes membership from institutions, organisations and enterprises that support a better future for patients. Join us and help shape the patient engagement landscape.