New Landscape Visualization Project Puts Patient Engagement on the 'Map'

Apr 27, 2016, 06:26 ET from PFMD

BRUSSELS, April 27, 2016 /PRNewswire/ --

A global coalition of stakeholders is co-creating a series of overview 'maps' of the patient engagement (PE) landscape in the lifecycle of medicines development. Described in a paper published today (Tuesday 26 April) by Patient Focused Medicines Development (PFMD), the 'maps' will depict the global landscape of PE efforts underway through various lenses and perspectives to make them meaningful to diverse stakeholders.

Health stakeholders agree that better integration of the patient voice in medicines development is important and this is reflected in the increasing number of PE initiatives. However, there is currently no clearly defined framework or agreed process for PE. "Our end goal is to develop an efficient, measurable and reliable meta-framework for PE that involves patients as partners. But this cannot be achieved without knowing, understanding and learning from the many initiatives that already exist. A global map of PE is an essential step towards a more structured and consistent approach to PE. Our approach is not restricted to mapping but incorporates mapping, understanding and promoting an exchange of learning," said Nicholas Brooke, PFMD Coalition Co-ordinator.

The PE landscape mapping project aims to provide an efficient mechanism for accessing information on what PE activities are ongoing or planned and to identify challenges encountered and lessons learned. Planned outputs from the project will:

  • Provide an overview of initiatives globally that involve patients - categorizing these by factors such as focus area, therapeutic area and geographic scope
  • Depict the spectrum of partnering with patients, given that there are varying degrees of patient involvement, as well as many potential touch points along the continuum of an initiative
  • Delineate the levels of patient expertise across initiatives recognizing that patients and their caregivers are a diverse population
  • Showcase initiatives in a way that allows for organizations to identify potential partnership and 'matchmaking' opportunities

"The White Paper is being shared as a work in progress and is part of PFMD's commitment to open and timely collaboration. It focuses on our approach and progress towards a map of the PE landscape. Rather than presenting stakeholders with a 'fait accompli', we encourage review and feedback to ensure that tools we develop are not made for but rather made with stakeholders, including patients," explained Nicholas Brooke.

The White Paper "Collaborative Patient Engagement: Mapping the Global Landscape - A first step in co-creating an action-orientated framework for patient engagement" is available at:

Notes for editors

  • The Patient Focused Medicines Development (PFMD) group, established in 2015, is an open, independent multinational coalition based on expertise and commitment to develop and drive implementation of PE. It is a non-profit collaboration whose activities are funded by member organizations.
  • PFMD is a truly global partnership and a collaborative platform that synergizes efforts to integrate the voice of the patient across the lifecycle of medicines development. Our vision is to improve global health by co-designing the future of healthcare for patients with patients. We aim 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.
  • PFMD has developed an organic and inclusive partnership strategy that encourages evaluation and feedback, review and ongoing refinement of their work towards a meta-framework.
  • Visit for more information about PFMD.