Interview with Dawn Richards, PhD, Director of Patient Engagement, Clinical Trials Ontario and Vice President of the Canadian Arthritis Patient Alliance. Dawn is also a member of the PFMD Patient…
Stakeholder Matrix Survey
Reaching our common goal of meaningful patient engagement and involvement in medicines development and lifecycle requires all stakeholders to not only have a common purpose and vision but also clear understanding and alignment of expectations.
That’s why we have launched the Stakeholder Expectations Matrix – an ambitious survey-based project to understand and clarify each other’s hopes and expectations from patient involvement in drug development
The value of the patient voice is increasingly recognised – but bringing together a broad range of stakeholders has its challenges. Reaching our goals requires all stakeholders to not only have a common purpose and vision for patient engagement, but clear alignment of objectives and expectations.
PFMD has already created a Global Mapping and Networking Tool, which continues to grow and demonstrate some great examples of effective collaboration across the world. Our working groups are also looking at some of the challenges – effective measurement, maximising value and behavioural and cultural issues – that we face in developing the framework for patient engagement.
However, it became clear early on that a definition, understanding and alignment of expectations was required as a baseline for this work. The nature of different organisations’ and individuals’ roles, requirements and endpoints mean that while we can all be focused on patient needs, there can be very different drivers and endpoints.
We want to know how these expectations align/conflict with each other, whether they are ‘realistic’, and how can they be met. We have grouped stakeholders into 7 main categories (patients/patient organisations; healthcare providers; payers/purchasers; policymakers/regulators; pharma/life sciences industry; researchers/academics; and research funders) and are carrying out around 60 in-depth interviews to do a deep-dive of stakeholder expectations in a qualitative approach.
We will use the survey results to develop a Stakeholder Expectations Matrix that provides a baseline understanding for collaboration in patient engagement. The Stakeholder Expectations Matrix and results will be published and will also be used to inform the ongoing co-creation of the meta-framework for meaningful and consistent patient engagement in medicines development and lifecycle.
The qualitative survey phase is in full swing and – depending on what we find from analysis of the results – intend to use the insights captured in a wider quantitative survey to get a more comprehensive picture.