The Challenge

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.

The Goal

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.

About PFMD

  • Vision
    Improve global health by co-designing the future of healthcare for patients WITH patients
  • Who We Are
    A truly global partnership that synergizes efforts that integrate the voice of the PATIENT across the lifecycle of medicine.
  • Mission
    To transform the way in which we understand, engage, and partner with patients globally in the design and development of research and medicines by focusing on unmet patient needs.

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.

The online collection tool in the framework development context


Conduct a landscape assessment of initiatives that involve the patient.


Develop a platform allowing for cross- pollination.

Synergizing Framework

Synergize and globalize good practices into an integrated patient involvement framework.