2022 Annual Report

Patient Focused Medicine Development

Collaboration leading the change in patient engagement


Introduction from the CEO.

When PFMD was first initiated 7+ years ago, patient engagement (PE) was slowly starting to become a topic of interest. Nowadays, the PE landscape is dramatically different and the PFMD members have been at the forefront of this shift, helping to shape a nascent, fragmented ideology into a cohesive, measurable, and demonstrative movement to bring patients to the very core of health systems.

In the beginning, the focus has been on co-creating the right tools and methodologies to make patient engagement happen, as part of an intensive and collaborative process. The result - the Global Patient Engagement Management Suite is now a widely accepted and utilized go-to source when starting and managing patient engagement initiatives. And it’s still growing - in 2022 we started exploring opportunities for greater PE in post-launch and early-discovery activities. Extensive work on remuneration standards for interactions between the patient community and the pharmaceutical industry was a focus, with a FAIR market value calculator expected in 2023. 

Slowly, over the years, patient engagement moved from a “nice to have” to a natural thought in all stakeholders’ minds, with, notably, regulators and HTAs starting to call for it as well in the last couple of years. This evolution started in drug development but naturally evolved towards other areas of the health ecosystem - medical technology, digital health, and health delivery.  And so did PFMD.

But with this success, unexpected challenges were waiting around the corner.

As we continued to engage through key initiatives like the Patient Experience Data stream, or through ample co-creation exercises during the Patient Engagement Open Forum (PEOF), a couple of things became clear. 

Firstly, a shifting need was observed. From patients serving various groups, answering multiple, sometimes conflicting requests from industry, regulators, etc, to a truly patient-centric system where patients are served by all the other stakeholders, and they don’t have to suffer from duplication of work. PEOF is a safe haven for dialogue and co-creation to happen towards this goal - 4,000+ people participated last year, including in the first in-person gathering since 2019.

Secondly, the need for PE to benefit from its own intelligence became clear. Not only by gathering best practices but also by measuring the value they bring (or not!), thus monitoring to learn and impact analysis became a key PFMD priority. A first step was the launch of the Metrics Selector, with more PE intelligence guidance coming in 2023.

Lastly, the entire ecosystem spoke for a focus on patient experience data (PED) generated through PE practices, and PE benefiting from real-world data. The two dimensions are not only closely interconnected, but they serve the entire health system from reimbursement practices to health solutions development. In 2022 we’ve seen clear signals from regulatory and HTA bodies in this direction, as well as the launch of a community-co-created PED Navigator (to complete what this is).

34 members and many more contributors have been hasrd at work in 2022 engineering change in the patient engagement ecosystem across many other areas. In medtech, a diverse group worked on an adapted PE training to support capacity building in the industry and beyond, while an extensive study about patient engagement needs in digital health has been undertaken. A focus on improving access to clinical trials through structured data and better digitalization was also a focus for the membership.

In the end, it’s clear that systemic change is not easy. Qualitative patient engagement becoming a central pillar in our health system can happen only through a strong, diverse community of ambassadors and practicians. Everyone has a role to play and an impact to bring. Learning from each other, motivating each other when things get tough, and pulling together complementary expertise and input, is the only way forward. And PFMD is committed to facilitating that both online (through Synapse, our digital community, virtual events, meetings and so much more) and offline in every interaction, conference, coffee, and chat. 

I invite you to explore further the various topics PFMD has been active in and, if you believe in this community’s goals and plans, get involved and help us shape patient engagement further in 2023. 


Patient Engagement & Patient Experience Data

Patient engagement (PE) and Patient Experience Data (PED) are emerging as a critical aspect in research and healthcare to deliver evidence-based patient unmet needs, health outcomes and impact.

Throughout 2022, the PFMD Membership focused on ensuring that the many PED developments reflect and include PE best practices and deliver on evidence-based decision-making with, and for, patients.


Development of the Global PE & PED Navigator

This tool aims to provide clarity on the what, how, when, why, and who of PED and the when and how of PE.

development-of-the-global-pe Find out more

Regulators and HTA representatives continuous  active participation in the PE & PED working groups, as well as in the various virtual & in-person PEOF events.

regulators-and-hta-representatives-coninuous-active-participation Find out more

Updated paper exploring the trends and increasing consideration of PE and PED by regulatory and Health Technology Assessment agencies

Find out more
Coming soon

A dynamic tool, building on the Global PED Navigator, that illustrates how and when patients can be engaged in the generation and use of patient experience data.

Peer-reviewed publications to increase the awareness of PE & PED integration for healthcare decision-making

Sponsors that made the work possible in 2022
50+ people from 32 organizations (patients, patient advocates, regulators, industry and more) were active in 2022
Monitoring to learn and generate better patient engagement intelligence

Throughout 2022 we focused on a single goal: to develop and leverage a co-created suite of tools and resources to embed an iterative learning process that increases PE intelligence within, and between, organizations.

Initiatives included recalibration of ESG commitments and metrics to complement current strategies with the inclusion of a more patient-centric focus, a tool to empower patients to provide feedback, the development and launch of a digital tool mapping PE metrics (see Metrics Selector) and more!


A bi-directional feedback resource tool, part of the Monitoring to Learn Strategy toolbox, was initiated with over 45+ PE ambassadors defining the guiding principles and key themes.

Find out more

Patient Engagement for better ESG became a key topic in 2022.

A taskforce was initiated and quickly became active in defining the project’s approach in order to embed a PE perspective into ESG/Sustainability strategies. Exploratory meetings with industry, leading ESG experts, and others (eg IFPMA, BSRT) helped define the project’s scope.

Metrics Selector Tool launched and already in piloting

A long-awaited co-created agile tool for identifying the right measurements for patient engagement practices has been launched in 2022, and has almost immediately entered in the regular use of PE champions. 

It was also presented at the “1st International Workshop on Patient and Public Involvement in Cancer Research”

Find out more
Furthering patient engagement in the MedTech sector

Enabling culture change and an increased understanding of patient engagement (and its value) in the medtech sector is a key priority for the PFMD membership. Moreover, integrating the medtech perspective in all key PFMD workstreams and activities has been an important priority of 2022. 

In addition to socializing and encouraging adoption of the patient engagement tools for medtech developed in 2021, 2022 saw a focus on capacity building - with an emphasis on developing an adapted version of the Patient Engagement Training.

This training is the first of its kind in the Medical Devices sector and will help accelerate the awareness and adoption of Patient Engagement practice and culture within the Medical Device community.

In addition to furthering the training and its adoption in 2023, the focus will be on building a PE Medtech cases repository and identifying MedTech-specific metrics of measurement.

Find out more
Patient Engagement in Post-Launch

In 2022 the focus was exploring and prioritizing opportunities for greater patient engagement in post-launch activity, including post-market monitoring and pharmacovigilance, reporting to regulatory agencies, sharing product information with the patient community, RWD/RWE, as well as on the co-creation of needed resources.


A co-creation session with 100+ experts and patient engagement leads helped define a strategy for development and growth for 2023

Find out more

5 potential tactics and areas of focus have been identified following the co-creation activities and insights gathering

Strengthened collaboration with Medical Affairs Professional Society through a speaking opportunity at the MAPS Webinar.

Patient Engagement in Early Discovery and Preclinical research

In 2022 we focused on exploring the appetite to address current challenges, opportunities, and good practices, and identify potential ways to enhance the ecosystem, building on the publication in 2021 of the How-to Guide for PE in early discovery and preclinical research.


PEOF session with insights and input from participants to inform strategy for 2023.Check out the PEOF Summary publication to learn more.

5 potential tactics and areas of focus have been identified following the co-creation activities and insights gathering

The Patient Engagement Open Forum (PEOF) Community provoking real change in 2022

Building our capacity and capability was of course a priority once again last year. Together with our partners, EPF and EUPATI, we poured our resources into our networks and tools that bring those with an interest in PE together.

2022 was a particularly inspiring year for the Patient Engagement Open Forum (PEOF) Community - a community of purpose, multicultural and multidisciplinary, and fully committed to patient engagement.

One million people reached in 2022 by PEOF’s work and contributions

60,000 people actively engaged in the community

1,500 participants in the virtual collaborative sessions

129 patient engagement champions working live for the first time in 3 years

Click here to access all of the PEOF sessions & resources.

During 2022 PEOF provoked change… and not in a theoretical, “some day in the future” sense. But here. Now. During many intense sessions, in collaborative Group Maps and over long coffee chats. All participants actively co-created ongoing projects in Patient Engagement and dared to dream about new ones.

Initiatives shaped by PEOF co-creation power

In 2022 PEOF became about engineering patient engagement as a movement, as a fundamental principle of our health ecosystem. Highlights include:

Organizing the first live event in 3 years. 129 patient engagement catalysts rolling up their sleeves for 3 days in the sunny Barcelona.

45+ inspiring voices driving change in the patient engagement community, including Maria Mavris from EMA, Theresa Mullin, from FDA, Sharon Terry from Genetic Alliance and Jan Geissler from Patvocates. 

First PEOF session in Japanese ran by our JPPaC partners.

First collaborative session with DIA Global

Sponsors that made PEOF happen in 2022
Delivering the right tools to support fair remuneration of the patient community

Co-development of remuneration standards for interactions between the patient community and the pharmaceutical industry has been a key priority for PFMD and all the partners for years now. This includes the co-creation of frameworks and a methodology to operationalize the Global Principles for determining fair remuneration at market value.

Over 20 pharmaceutical companies and 40 patient organizations have been involved in the co-creation process until now, together with key bodies such as the IFPMA Patient Centricity Working Group, the Efpia Ethics and Compliance Committee, and the Efpia Patient Think Tank

Through co-creation and stakeholder engagement, the project developed resources to support patient engagement partners and drive good practice whilst ensuring compliance with relevant Codes of Conduct and local regulations. Project resources include:

Global Principles for remunerating the patient community for interactions with the pharmaceutical industry.

Harmonizing and building on previous collaborative work, these Principles provide objective guidance to drive consistent, fair and transparent remuneration.

Global Remuneration Frameworks

Fair remuneration must consider the complexity of the patient engagement activity and the expertise required. To operationalize this aspect of the Global Principles, the Global Activity and Expertise Frameworks were co-created, building on previous collaborative work.
The Frameworks are the foundation of a global methodology for determining fair remuneration.

Fair Patient Engagement Planner

A practical digital tool to define patient engagements and drive transparent dialogue on fair remuneration.

Coming in 2023

Growing the global patient engagement digital map & network on Synapse

Synapse, your digital tool for patient engagement, enables more effective action, bringing initially disconnected, isolated, or duplicative activities within a structured PE framework. Beyond a traditional website, Synapse maps and connects experts, organizations, events, initiatives, and resources, empowering all players in the PE ecosystem.

Synapse is a network with:

4500+ Experts

1500+ Organizations

600+ Initiatives

430+ Events

1600+ Resources


Synapse has been awarded a tender by EPF and selected as the ideal hosting platform for the IMI EU PEARL Patient Engagement Platform. The project will run from October 2022 to March 2023.

Synapse registered a total of 35,275 sessions, and a total of 1470 new users in 2022, with a growth of 37%

Building collective intelligence from the community with the release of the patient expertise survey.

Supporting the monitoring to learn approach for patient engagement through the launch of the Metrics Selector.

Coming in 2023:

  • Personalized content in Synapse with a recommendation system
  • Platform and email notifications including a weekly summary of activities and latest highlight
  • Launch of the beta version of Fair Remuneration digital tool, Q1 2023
Building local level patient engagement intelligence

Navigating Country Codes of Conduct and other regulations that impact interactions between pharmaceutical companies and the patient community can be an overwhelming task. The Patient Engagement (PE) Guidelines provide a quick reference to point all key stakeholders in the right direction!

The country-specific resources outline parameters from country Codes of Conduct that govern interactions between the patient community and pharmaceutical companies in terms of remuneration, reimbursement, hospitality and transfer of value reporting.

The Country Patient Engagement Guidelines resources will be integrated in Synapse and are made possible in collaboration with CGO Global and Lumanity.

In 2022 the first PE Guidelines for The Netherlands, Belgium, and Spain were launched, alongside an editorial focused on the project. More countries will be included in 2023

Engaging in scalable capacity & capability programs for the acceleration of Patient Engagement in Asia

Create a scalable capacity & capability program for the acceleration of patient engagement in Asia is a key PFMD focus. It includes the sharing of PE resources and best practices, while spreading awareness regarding PE through the Center of Regulatory Excellence (CoRE) and Coalition to Accelerate Patient Engagement in Asia-Pacific (CAPE).

On November 22, the first ever Japan-focused PEOF session was held by Japanese Patients for Patient-Centric Care (JPPaC) to adapt PFMD resources, the Patient Engagement Quality Guidance (PEQG) and Synapse, to the local context of Japan.

Ongoing dialogue with various regional players to develop new and/or support existing capacity & capability-building programs will continue in 2023.

Building capacity through the Patient Engagement Training

In 2022 we expanded the reach of PFMD’s co-created PE Industry training through promotional campaigns, whitepapers, partnerships, adapting it to the needs for the Medtech Industry, and exploring potential new organizations that can implement the PE Training internally.


38,000+ People enrolled

210+ Organizations taking the training

90+ Countries

PFMD's growing exposure and impact through the Patient Engagement community

PFMD’s network and impact grow every year due to the relentless support of its members and contributors, as well as their involvement in advancing patient engagement across many different dimensions.

8,137 People closely following PFMD's activity

People in PFMD database

238,758 Active interactions on PFMD channels

Total engagements

2,942,623 People reached by PFMD messages

Total reach

44,635 People interacting with our various tools

Total views on PFMD & PEM Suite web pages

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PFMD Membership Growth and growing collaborative network

PFMD continues to welcome new members from across the entire PE ecosystem as we enrich and broaden our membership base year on year. New members who joined our ranks in 2022 include

Clinical Trial Information Network: connecting information providers with information users with new distribution capacity

The healthcare system evolves every day. But access to life-saving clinical trials is still a challenge. An open, non-competitive repository of clinical protocols enriched with additional structure and information for better matching of clinical trials.

The solution? An open, non-competitive repository of clinical protocols that are enriched with additional structure and information so that better matches can be made between patients and providers of clinical trials.

Find out more

Two pilots ongoing for breast cancer and multiple myeloma

A completed Pilot Demo that demonstrates the potential structured clinical trial data in matching and the opportunity to enrich clinical trials with additional data from Patients and Patient Organizations

Diversity & Inclusion strategy: identified and validated additional elements to enrich clinical protocols in the pilot based on insights from the in-person PEOF

Demo Pilot presented at Clinical Trial Europe, Amsterdam

The following sponsor have made this work possible in 2022
Establishing a Patient Engagement Framework for Digital Health

The digital health group showcased in 2022 a dedicated effort to map, understand, define and align on the role of patients in digital health through three ongoing workstreams:

Structuring the discussion via a digital health landscape mapping & taxonomy. Tother with identifying the needs, opportunities, benefits, and challenges of engaging patients in digital health, it all fed into a publication on taxonomy of PE in digital health.

Developing guiding principles, resources, and best practices in digital health data governance models. The focus was building on the input of PFMD members and the April & June Patient Engagement Open Forums. The goal? Understanding how patient rights regarding data management are currently defined and protected through the analysis of existing governance models, thus feeding the adaptation of PE Quality Guidance for digital health.

PE access, awareness, and capacity building in digital health. Through leveraging resources and adapting existing PFMD tools, such as Synapse and the PE Quality Guidance, for digital health.

A key focus in 2023 will be the Stakeholder Expectations Matrix focused on patient engagement and digital health.


Expanding multi-stakeholder diversity & expertise - new & deepening relationships in 2022

Aligning with other initiatives and platforms to build strategic relationships and develop expertise

Financial report

2 404 000


1 425 000

Membership fees

2 365 431

Project expenses

979 000

Specially funded projects

The PFMD Staff

Nicholas Brooke

Executive Director

Hayley Chapman

Senior Program Director

Elizabeth Priest

Program Director

Jean-Christophe Capelle

Financial Director

Roxana Radu

Senior Communication Manager

Nicole Wicki

Program Director

Silvia Bornengo

Program Manager

Lidewij Eva Vat

Program Director

Vincent Raske

Associate Program Manager

Lise Brooke

Product Owner & Communication Manager

Adeola Aderemi

Communication Manager

Maximiliane Rauch

Program Manager

Danielle Barron

Editor in Chief

Brian Goodman

Program Director

Daniela Luzuriaga Ubilla

Program Manager

Quentin Clermont

Chief Operations Officer

Gulwish Ahmed

Communication Manager

Gary Finnegan

Editor in Chief, Break Dengue

Ify Sargeant

Scientific Editor

Jeremy Jamar

IT Architect

Matt Szafert

Executive Assistant

Maddalena Benivento

Program Manager

Diana Aron

Program Manager

Fabienne Zeegers

Regulatory Affairs Consultant

Nicola Bedlington


Laura Mckeaveney