Global coalition urges systematic removal of organisational barriers to patient engagement

Culture and process change is a priority for patient engagement in medicines development, says a global coalition of health stakeholders. A paper published on the 9th of August by Patient Focused Medicines Development (PFMD - - a non-profit coalition that aims to embed patients as active partners in the design and development of research and medicines - highlights the need to remove organisational barriers that prevent effective patient engagement.

Marc Boutin, Chief Executive Officer of the US National Health Council (NHC), PFMD founding member and lead author of the publication said: "A growing number of health stakeholders have embraced the need for patient engagement. But no matter how well-intentioned or well-executed their individual initiatives are, we need a more global environment that embraces and facilitates patient engagement - removing barriers and promoting effective implementation. Without a broad and unified approach, desired outcomes will not be achieved."

In the paper, authors discuss real or perceived obstacles to achieving this goal, such as operational restrictions that prevent different health stakeholders from collaborating. For example, patients or patient groups wanting to work with pharmaceutical companies may need a different type of written agreement or contract that does not fit into the traditional types of 'service agreement', 'consultant', 'partnership' or 'collaboration'. Other challenges include the need to

  •  create a clear and safe legal environment for patient engagement to address concerns of the pharmaceutical industry and others wanting to engage with different stakeholder groups;
  • identify and overcome the initially 'uncomfortable marriage' of stakeholder groups with traditionally dissimilar viewpoints, objectives or ways of working;
  • provide an open and transparent environment of trust and respect where collaboration of disparate stakeholder groups is not seen as 'suspicious' but instead recognised as an essential first step in co-creating solutions to shared challenges for mutual benefit;
  • and overcome disparity of access to resources amongst stakeholders that may prevent truly inclusive and representative collaboration in the co-creation of patient engagement initiatives.

Published today in the peer-reviewed journal Therapeutic Innovation & Regulatory Science (TIRS), the paper "Culture and process change as a priority for patient engagement in medicines development" also discusses three other priorities. These are

  • developing a global meta-framework for patient engagement that covers the entire medicines development and lifecycle pathway to facilitate effective and consistent patient engagement;
  • developing an information exchange platform to allow stakeholders to benefit from sharing their experience and good practices, preventing duplication of effort and resource waste, and providing an objective platform for actively sharing patient engagement opportunities 
  • and developing learning experience and training opportunities - for all stakeholders including patients - to equip teams and individuals leading patient engagement with good practices and understanding of current patient engagement approaches and activities.

PFMD launched an on-line collection tool this summer (26 June) designed to capture key information from patient engagement initiatives across the globe. A key feature of the tool is that information about each initiative is 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.

A unique report with visual mapping snapshots is generated for each organisation or user that enters data. The report shows where their initiative 'fits' in the landscape according to a range of factors including therapeutic area, geographic scope, and degree or spectrum of patient involvement. As described in a recent white paper by PFMD, data collected through the tool is being used to produce a series of overview 'maps' of the patient engagement landscape in the lifecycle of medicines development that portray the global patient engagement landscape through various perspectives to make them meaningful to diverse stakeholders.

Boutin said: "PFMD brings together individuals and organisations committed to early and effective patient engagement as an integral and valuable component of the medicines development and are committed to making it happen within their own organisations. Embedding this spirit of patient engagement into the entire medicines lifecycle will require significant changes in the way stakeholder organisations traditionally work. Our paper highlights the establishment of cultures and processes that ensure patient engagement becomes a critical component in medicines development."

Notes for editors

  • The paper "Culture and process change as a priority for patient engagement in medicines development" was published Tuesday 9th of August by the peer-reviewed journal Therapeutic Innovation & Regulatory Science (TIRS), the official scientific journal of DIA. Access the paper at
  • Patient Focused Medicines Development (PFMD), established in 2015, is an open, independent trans-Atlantic coalition of patients, patient groups and the pharmaceutical industry across diverse diseases and conditions. It has adopted a governance model that ensures at least equal patient leadership that is based on expertise and commitment to develop and drive implementation of patient engagement. Visit for more information about PFMD.
    > The PFMD online collection tool can be accessed at
    > The mapping initiative is described in detail in the white paper "Collaborative Patient Engagement: Mapping the Global Landscape - A first step in co-creating an action-orientated framework for patient engagement" available at

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