Interview with Roslyn Schneider, Global Patient Affairs Lead of Pfizer and PFMD Board Member.

The PFMD Patient Engagement Quality Guidance is global in its intent, and multinational in its creation. Thus it makes sense that it garnered excellent feedback and significant interest from attendees at the recent EyeForPharma LATAM (Latin America) conference in Miami, US.

Roslyn Schneider, Global Patient Affairs Lead of Pfizer and PFMD member presented the Patient Engagement Quality Guidance at the conference, as part of a presentation based on mastering patient engagement activities throughout the life cycle of medicines. Her aim was to outline the vital principles necessary to plan, develop and assess the quality of patient engagement programs within an organisation for the industry and patient representatives in attendance.

A number of themes emerged during the conference, she explained. “These specifically highlighted what’s most important to the patient community when it comes to thinking about them more holistically not just within the box of the single disease or the single medicine.”

These included the significant challenges and disparities in terms of access to care and medicines, and also the support needed to build bridges and dialogue between patient groups and Government/policymakers.

“There were excellent conversations about how systems and technologies could potentially help the conversation between patients and their healthcare professionals, but also between patients and Government and policymakers where they need much more support,” she explained.

Schneider praised the central role that patients and the patient community had at the meeting.

“Patients were not simply guests at an industry meeting, it really showed how patients are eager and in many cases partnering and collaborating with all sectors of the healthcare ecosystem.”

Before outlining the Patient Engagement Quality Guidance, Schneider first spoke of her experience as Global Patient Lead at Pfizer, explaining how they are incorporating the general principles of patient engagement more systematically in order to be more patient-centred.

“Fundamental to this are the external collaborations Pfizer is engaged in, including PFMD and PARADIGM; we are bringing in what is co-created within those mechanisms and applying it internally.”

Schneider then discussed the genesis and background to the Patient Engagement Quality Guidance, explaining how the patient engagement management system had evolved within PFMD.

“It wasn’t just PFMD members who contributed, and although industry had a strong representation, it was more about the stakeholder groups who would think this is important, including but not limited to industry or the patient community.”

Schneider invited people to explore the guidance,and the seven quality characteristics it includes. “I wanted them to explore the tools that would be there for them to plan their patient engagement activities. These tools allow organisations to hold up a mirror, and ask what they are doing, and reflect on how it is being done. I extended an invitation to anyone who could conceive of using this to do so.”According to Schneider, following her presentation she engaged in a number of discussions with people who found the Guidance has resonated with them, and who praised the co-creation process. “The feedback was that it is was unique to have something that was not created by just one stakeholder group, but by many, and also something that is tangible and concrete.”

Schneider and other PFMD collaborators now hope to bring the Patient Engagement Quality Guidance to more audiences at events and conferences around the globe, and said she hopes it will have a “snowball effect” by serving to enhance the other work being done in this critical area.

“The more we can get it out into the public domain, the more of an impact it may have. It is clear that people want to measure and plan what they are doing, and engage with a broader framework that’s recognised by all stakeholders.”