Patient Engagement
Open Forum

The Patient Engagement Open Forum is going online with a series of virtual events planned this year. A patient-centred environment for co-creation of solutions with and by all involved stakeholders to practice and advance patient engagement (PE).

Registrations are open for the sessions on October 6 & 7

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About the Forum

The Patient Engagement Open Forum 2021 is organized online as a series of events, once every quarter. The events span over two afternoons (CET), back-to-back, four times a year: April, June, October, and December.

2021 Agenda

All virtual sessions will start at 14:30 CET/ 8:30 EST. Information related to the event, sessions, speakers and post-session resources are available on Synapse – the global patient Engagement map and network

October 6, 2021

14:30-16:00 (CET): Visualising the patient pathway in precision medicine: the identification of barriers and best practices across different stakeholder groups

Session resources

  • 16:00-16:30: Break

16:30 to 18:00 (CET): Electronic medicine leaflets – What do patients want?

Session resources

October 7, 2021

14:30-16:00 (CET): From Vision to Reality: Patient Engagement in the Medtech Sector

Session resources

  • 16:00-16:30: Break

16:30 to 18:00 (CET): Towards harmonized Global Principles for Remunerating the Patient Community for interactions with the pharmaceutical industry

Session resources

June 23, 2021

14:30-16:00: Understandings, Learnings, Guidances: What do we know so far on the Use of PED for Healthcare Decision-Making?  (90 min) 

  • 16:00-16:30: Break

16:30-18:00: Taking action to engage paediatric and young patients in medicines R&D (90 minutes)

June 24, 2021

14:30-16:00: Navigating Digital Health: Shaping Guiding Principles for a Responsible Data Model (90 minutes)

  • 16:00-16:30: Break

16:30-18:00: Diversity, Inclusion and Equity in Patient Engagement (90 minutes)

April 14, 2021

14:30-16:30: A Time to Reflect & to Move Forward  

  • 14:30-15:30: Welcome & Intro (45 minutes + 15 min break)
  • 15:30-16:30: Co-creation activity & wrap up (60 minutes)

16:30-18:00: From PE Metrics Framework to Actionable Tool – What’s After PARADIGM?

April 15, 2021

14:30-16:00: How to Connect Patients to Digital Health? 

  • 16:00-16:30: Break

16:30-18:00: Patient Engagement to design, generate, analyze and decide on Patient Experience Data

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Program Committee

Why you should attend

Get an in-depth overview of the impactful collaborative work streams in the patient engagement ecosystem and network with professionals from healthcare industry, patient advocates and organisations, regulatory representatives and nonprofits that are working together to make patient engagement the norm through tools, recommendations, good practices, framework and capacity building.

Highlights of the programme:

Presentations of ongoing patient engagement projects around the world

Interactive sessions where you will get to be involved in the co-creation of the tools shaping the future of patient engagement

Access to resources available now and receive an update about the upcoming tools

About us

The PE Open Forum is jointly organised by PFMD, EUPATI and EPF

Patient Focused Medicines Development (PFMD) was established in October 2015 as an open, independent global coalition of health stakeholders.

PFMD aims to transform the way in which we understand, engage, and partner with patients globally in the design and conducting of research and development of medicines by focusing on unmet patient needs. They are bringing together relevant experts and synergizing disparate but complementary efforts that integrate the voice of the PATIENT across the lifecycle of medicine.

PFMD is driving the culture change and co-producing tools needed to make systematic patient engagement happen.

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The European Patients’ Academy (EUPATI) is a pan-European programme implemented as a public-private partnership by a collaborative multi-stakeholder consortium from the pharmaceutical industry, academia, not-for-profit, and patient organisations. The Academy was started, developed and implemented as a flagship project of the Innovative Medicines Initiative, and continues to be led by the European Patients’ Forum.

EUPATI supports patient engagement in medicines development by providing education and training to patients, industry, and other stakeholders through e-learning, face-to-face training, 23 national platforms, and an online Toolbox currently used by more than 4 million users in 13 languages.

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The European Patients’ Forum (EPF) is an independent non-profit, non-governmental umbrella organisation of patient organisations across Europe and across disease-areas.

Their 75 members include disease-specific patient groups active at EU level and national coalitions of patients.

EPF’s mission is to advance the interests of patients and patients’ communities by strengthening their collective impact across Europe through effective advocacy, education, empowerment, and partnership.

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