2016 was an exciting year for the Patient Focused Medicines Development (PFMD) programme. We launched the first dedicated global patient engagement (PE) mapping and networking tool, and began work towards a PE meta-framework. 2017 will see further work on expanding the scope and dissemination of the tool, and development of the meta-framework via focus on post-launch and usage, as well as a comprehensive stakeholder expectations survey and launch of a patient engagement pledge for key stakeholders. Explore the programme, including our financial report, in more detail in the complete PFMD project page.

Key achievements PFMD Governance

Key achievements in 2016

Co-creation of patient engagement meta-framework

PFMD held the first two multi-stakeholder working groups, focused on early and clinical phases of medicines development, which will lead towards the co-creation of a patient engagement meta-framework.

Patient engagement Global Mapping and Networking Tool

In 2016, PFMD launched the first patient engagement mapping and networking tool. 130 initiatives representing 97 organisations were gathered, giving users a searchable who’s-who of patient engagement and allowing them to identify and connect with potential collaborators.

PFMD's membership growth in 2016

In 2016 PFMD’s membership grew to 21 different organisations, including patient organisations, pharma/life sciences industry and health technology assessment.

PFMD Publications

In 2016 PFMD published its first peer-reviewed publication: Culture and Process Change as a Priority for Patient Engagement in Medicines Development, in the “Therapeutic Innovation & Regulatory Science (TIRS)” - the official scientific journal of DIA.

Future plans

Further development of the Global Mapping and Networking Tool

The tool will see further development in 2017. Some examples of new features include an updated questionnaire, an experts network and a community-reviewed resource library. Learn more

Patient Engagement Framework Development: next steps

Following the initial two multi-stakeholder working groups, which focused on early and clinical phases of medicines development, working group 3 will take place in early 2017 to focus on the post-launch and usage phases. Learn more

The Patient Pledge

PFMD wishes to translate aspiration into concrete commitments from from various stakeholders (pharma industry, research communities). The Patient Pledge, which we will launch in 2017, will list such a set of commitments, based on three guiding principles: listen, co-create and communicate. Learn more

The multi stakeholder expectations 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. Learn more


800 000 €
Net carry over
125 000 €

In-kind contribution

In-kind contribution
52 859 €


Mapping Tool Development
212 319 €
Consultancy Services
199 040 €
142 802 €
Program Coordination
117 575 €
General Management
99 981 €
79 621 €
Legal expenses and financial audit
13 500 €
Membership, Conferences, Events
11 983 €

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