We have developed an online tool to capture and map key information from PE initiatives across the globe. The maps will inform the development of a measurable and reliable meta-framework for PE that involves patients as partners, incorporating good practice from the many initiatives that already exist.
Why develop an online collection tool?
This online collection tool has been developed to gather data where there may be no documentation publicly available. A key feature of the tool is that information about each initiative will be entered by those directly involved – rather than relying on desk research alone – providing a greater opportunity to understand patient engagement efforts, including their successes and limitations. The tool captures quality data using pre-defined standards to allow for consistency in depiction and to ensure that the information collected across various initiatives is credible, consistent, and up to date.
PFMD’s overarching goal is to work with patients and other stakeholders to co-create and drive implementation of an integrated, efficient, measurable and robust meta-framework to deliver a consistent approach to patient involvement.
Problems addressed by Initiative
Although initiatives that seek to involve and engage patients have increasingly become a priority across healthcare, there are no globally accepted guiding principles around patient involvement and engagement that identify and integrate good practices. As a consequence, current patient engagement is sporadic, fragmented and unstructured with no clearly defined framework or agreed process. Without such a framework, the ability of patient engagement activities to meet agreed and desired objectives will be compromised.
Providing guidance to others in their efforts
PFMD Executive Director
Deputy Chief Patient Officer, Global Director, Scientific Medical And Patient Perspective (SMPP)
New York, United States
Head Global Medical Liaisons and Communications
Vice President, National Programs
new york, United States
Head of Patients in Partnership
London, United Kingdom
Global Patient Engagement Leader
Secretary General at European Patients' Forum
Patient engagement manager