In 2020 every one of us has been impacted, whether at an individual level, our families and friendships, or our work. Beyond our personal experience, vulnerable communities have been hit the hardest, inequalities have deepened and grown, and patients have experienced all sorts of extra burden to various degrees.
The global pandemic revealed many gaps and inequities in our health systems but it also shone a light on science, the rigours of drug and vaccine development, clinical trials and health systems. The legacy of COVID-19 may ultimately be the realization that health is not simply another commodity but the foundation on which all activities are built, from social bonding, travel and leisure to the economy. COVID-19 has also demonstrated that it is only science that will help us to navigate a pandemic.
Against this dramatic backdrop, the practice of engaging patients reached a whole new level. 2019 had already seen a paradigm shift take place, with focus switching from the risks of involving patients to the risks of failing to engage with patients.
But 2020 saw an even bigger shift, as individual organizations simply doing their part began to amass into one growing cohesive global movement sharing the same understanding, language, practices, tools and educational material to replicate, scale and sustain patient engagement. Platforms like the Patient Engagement Open Forum, the patient engagement network Synapse and the Roundtable sessions organized by the Center for Regulatory Excellence (CoRE) and the Milken Institute that involved key stakeholders from across Asia, to name just a few, are allowing this global movement to develop and finesse its infrastructure. There is now a treasure trove of practical tools to be found, such as those from PARADIGM or the Patient Engagement Management (PEM) Suite; these have the knock-on effect of empowering people within the field to think with a PE mindset.
It is evident that the time has come to prioritize health; to do it together with patients playing a key role to help shape better health systems and deliver better health outcomes. In PFMD, we believe patient engagement is on the cusp of taking a strategic turn, to scale in drug development, to broaden its geographic spread and to expand in other health systems, in digital health and data or in the medical devices and technology industry. Our belief is that an investment in the patient community will deliver rich rewards, ensuring better outcomes for patients.
We would like to acknowledge and thank all patient engagement (PE) contributors and ambassadors, all connectors and champions of collaboration and collective action. We would particularly like to thank all those involved in the projects listed below. Thank you for all your hard work and diligent efforts, even in the face of adversity.
Let’s look at 2021 together and build on our growing momentum to take PE to yet another level in further strategic areas. An unprecedented scaling of patient engagement can happen through expanding our community and harnessing the power of its collective action. After a challenging year, we can finally look to the future with optimism as we move forward together.
PFMD is continually striving to build upon its offering in patient engagement, leveraging our expertise and that of our members and the network to further accelerate the ultimate goal of better health outcomes for patients. The COVID-19 pandemic offers us an opportunity to use these skills and insights to clearly detail the impact of the pandemic on patients as part of the Pandemic 360 Impact on PE and the Patient Community project.
2021 will also see us carry out a landscape analysis of patient experience data, ultimately producing a multi-stakeholder Patient Experience Data Roadmap.
Patient Engagement Open Forum has established itself as one of the must-attend events on the patient engagement calendar. 2021 will see it reach new heights in terms of its impact while still offering the ideal environment within which to catalyse patient engagement efforts.
PFMD’s focus will also turn to clinical trials, with the development of a Clinical Trial Information Network, co-created with patients for patients.
Furthermore, we will continue our geographic expansion via our partnership with CoRE, seeking to support patient engagement across Asia.
2020 saw the formalization of PEM Suite - an effective way of coherently integrating, within a single hub co-created, systematic solutions for patient engagement. Since the beginning, The PFMD network worked to aggregate existing knowledge and tools, identify good practices and coherently combine them before designing accessible and useful avenues for the various audiences that will use them.
Map and Network
Connecting communities on work related to medicines development lifecycle, maternal health, precision medicine, medical technology & more
The PFMD network is making sure to aggregate existing knowledge and tools, identifying good practices and coherently combining them before designing accessible and useful avenues for the various audiences that will use them. The result is the Patient Engagement Management Suite (PEM Suite). A hub of co-created tools, resources and practices to help stakeholders adopt patient engagement in a systematic, efficient and meaningful way.
Synapse continues to play a core role as the hub for the entire patient engagement network. A busy place, it got even busier in 2020 with a 43% jump in the number of organizations joining and the number of individual users increasing by over one-third. Already a rich repository of information, the number of resources more than doubled during 2020, bringing the total to 738, while 138 events were also added. In addition to this, the outcome of a co-creation working group identified over 140 training and educational resources that were reviewed and added to the Patient Engagement Training Catalogue.
Enabling the growth of the global patient engagement network
Launched 3 weeks after pandemic start - with high-quality resources, meaningful for PE communities.
Dynamic catalogue of patient engagement training and educational
Over 140 PE training and education resources shortlisted by experts, for different skill levels and interests.
Specialized lens on conditions in Synapse enabling thematic networks. Easily find and engage with experts, resources, initiatives and more related to a specific condition.
Helping the PE community stay up to date with the developments field through an improved and personalized Synapse experience. See customized and latest highlights upon each visit.
Helping organizations keep track of their PE activities and related performance through user-friendly, private dashboards and personalized reports.
Helping the PE community reach the latest relevant info through a Synapse smart search - predictive and intuitive auto-complete search engine.
New ways to showcase PE work, as well as to plan and manage new projects, through a digital integration of the Patient Engagement Quality Guidance.
Making it easy to keep in touch with the PE trends and community since 2015.
Growing the global patient engagement digital map & network on Synapse
Current size of the Patient Engagement network (2015-Nov 2020)
Items in the Patient Engagement Training Catalogue
A COVID-19 Hub was established on Synapse within weeks of the pandemic being declared, on March 26th 2020. The goal is to centralize information and resources intended to teh patient and patient engagement community. It immediately found an eager audience interacting with the tool, illustrating the need for factual and informative content on COVID-19 from trusted sources.
Almost 140 pieces of content were published and over 90 sources were included. PFMD also published a series of blog posts exploring how the pandemic had impacted patient organisations, and this series will continue into 2021. The Hub will continue to highlight the impact of the pandemic on patients and their relatives, their experiences, and their relationship with healthcare systems.
Launched 26th of March
138 content items published
90+ sources including:
The Cancer Collective, Fastercures, WECAN, EFPIA, NHCC, Parkinson’s Foundation, EMA, EPF, IAPO, EURORDIS and more
Editorial series exploring COVID-19 burdens in patient organizations
The series of How-To Guides represent in-depth practical guides for specific patient engagement activities and form key tools in the Patient Engagement Management (PEM) Suite. Their advancement in 2020 was the result of sustained collaboration and co-creation by a range of invested stakeholders.
A total of 124 participants representing 60 organisations across industry, patient groups, academia, healthcare and other stakeholders worked together on devising and finessing the Guides before their publication. Each “How-to Guide” is focused on different activities at various stages of the medicines development lifecycle and is based on the Patient Engagement Quality Guidance. Due to launch in 2021, feedback suggests that they will become an indispensable tool for those seeking to begin or build on their patient engagement activities.
How-To Guide for PE in the Early Discovery and Preclinical phases
This guide takes you step-by-step through an innovative process of identifying key patient partners, gaining important insights that help improve early research. Beginning with identifying the unmet needs, developing research approach and fostering important and long-term partnerships.
“The fundamental reason for working together is the same as it is for later stages of development: we want drugs that address what matters to patients.”
Dr David Feldman
National Kidney Foundation and PFMD member
How-To Guide for PE in the Clinical Outcome Assessment development
A step-by-step guide to engaging patients and caregivers in the selection & development of clinical outcome assessment (COA) instruments.
“It’s been a very positive experience working with a range of individuals cross-nationally who are committed to moving patient engagement efforts forward so that it becomes a standard process in the drug development continuum.”
Research Associate III with the Patient-Centered Research team at Evidera/PPD
How-To Guide for Protocol Design
A step-by-step guide which builds from existing frameworks and integrates the patient perspective into a detailed step-by-step approach to protocol design and development.
“If patients are involved in the design and execution of trials, it makes the studies more patient-friendly and more responsive to the needs of patients.”
of Eurordis and PFMD member
Understanding PE in Regulatory phase
Patient engagement in the Regulatory phase starts much before the regulatory review of a medicine. This work based on qualitative interviews aims to understand the needs, requirements and opportunities for more comprehensive and systematic PE and use of Patient Experience Data to support downstream regulatory milestones.
“Patients need to understand how the industry works and companies need to know what’s important to patients. Training can help to bridge the gap.”
Professor Benedikt Van Nieuwenhove
director of European Centre for Clinical Research Training and PFMD member.
Understanding PE needs in the Post-launch phase
Based on a dual surveys for patients and HCPs to understand the expectations and challenges related to information leaflets, package inserts and the important dialogue between patients and their doctors.
The surveys resulted in over 1300 responses across the globe.
The analysis from this work will be the basis for potential recommendations to integrate patients’ and HCP needs in the making of these information leaflets.
“Patients and everyone involved along the value chain need to access relevant content and proactively build up a common language. The PFMD database is looking to deliver this promise,”
Pharmacist and PFMD member
How-To Guide for Plain Language Summaries in scientific publications
A 5-step guidance that helps stakeholders to involve patient partners as co-authors in the development and dissemination of plain language summaries of scientific publications
Patient engagement training and educational resources repository
A selection of resources that have been evaluated for relevance by a multi-stakeholder group - presented in an easy to access format with a useful search functionality
Methodology for development
A cornerstone of our endeavours to defragment patient engagement, our PFMD Patient Engagement Training programme reached an even greater global audience during 2020. A co-created initiative with 24 different organisations across industry, patient groups, and other stakeholders, the goal is to help build patient engagement capacity in a consistent manner across the entire pharmaceutical industry. Functioning as an integral part of the PEM Suite and integrating content and good practices co-created for 5 years, its unique design allows for all organisational and skill levels to benefit from its learnings, while also fostering the culture change necessary to embed patient engagement across each division.
Level 1 training was initially launched in Summer 2019, and in 2020 this was enhanced with the launch of a Short Version that served as a short introduction to patient engagement. In 2020 Level 2 of the training was also launched continuing the training in a more practical implementation mode. Another piece of the puzzle was introduced at the end of the year when the Patient Engagement Training and Resources Repository, a collection of more than 140 worldwide training courses and educational materials, was launched. Level 3 will launch during 2021, bringing the Patient Engagement Training Catalogue to industry professionals.
Adoption across the industry has been fast; as of November 2020, a total of 21,400 participants had enrolled, from 144 organisations in over 140 countries. The course has been completed by over 11,600 participants, with a further 9,000 in progress. The PE Training has also received broader recognition, achieving the accolade of being a finalist in the Reuters Events Pharma Awards Europe 2020 in the Most Valuable Collaboration category.
Patient Engagement Basics
A 15-minute introduction to patient engagement
Patient Engagement Basics
A 15-minute introduction to patient engagement
Get a general idea of what is meaningful patient engagement and who can contribute to it.
Available in 6 languages
Patient Engagement Awareness
What is patient engagement and how to get it right (Level 1)
Patient Engagement Value
> What is patient engagement and how to get it right.
Learn to define when patient engagement happens, who should do it and when patients should be involved.
Divided into chapters
You can take the training at your own pace
Patient Engagement in Practice
Your first step to making it happen (Level 2)
Patient Engagement in Practice
Your first step to making it happen
Operationalize the patient engagement fundamentals acquired in the first training level and understand how to apply them in your day-to-day work.
Divided into chapters with practical exercises
You can take the training at your own pace
Patient Engagement Training and Resources
A selection of patient engagement training courses and educational materials
Deepen your patient engagement knowledge.
Sourced, reviewed and recommended by a multi-stakeholder group
Available in Synapse, the patient engagement network
Modular training on specific activities, conditions, and populations.
Benefits of collaboration
Shared purpose, responsibility and expertise resulted in:
High quality and credible content
Fast production & delivery
Increased industry adoption
Increased reach globally
Reuters Events Pharma Awards Europe 2020 finalist - Most Valuable Collaboration category (5 min presentation, pdf poster, and promotional video) - From 13 categories over 450 projects submitted - 65 shortlisted entries DIA Global 2021 abstract submission (pending for approval)
Reach and impact
(as of November 2020*)
Course in progress
The PEOF has gone from strength to strength since its inception three years ago. Its genesis was the result of a collaboration between PFMD, PARADIGM and EUPATI, three entities with the vision of providing a forum for collaboration and cooperation in a non-competitive and multi-stakeholder environment.
In this highly interactive environment, attendees do not come to “learn” - they come to take part. By opening the floor to all invested stakeholders, it provides the ideal conditions in which PE can be catalysed. In 2018 at the first meeting, there were almost 100 attendees - by the following year that number had doubled. And despite the coronavirus epidemic, the PEOF had a seamless move to virtual webinars and sessions in 2020 - more than 1500 people registered for the online edition. PFMD remains committed to building on the success of the PEOF and will continue and foster the collaborations that have resulted in high quality outputs over the years.
The Synergist goal is to bring all relevant stakeholders around the table to work together for societal impact. In a world of scarce resources, we expect the for-profit side to support societal impact and enable the participation of not-for-profit contributors. The Synergist, as a not-for-profit, is housing these afore-mentioned programs. They are managed through comprehensive governance structures, but not as separate legal entities. Each program benefits from full financial autonomy, including audit.
Split of PFMD Turnover
They made all this possible
The PFMD Board Members consists of:
Vice President Patient Engagement, National Kidney Foundation
Executive Director, FasterCures (A Center Of The Milken Institute)
SVP And Global Head, Patient Centricity, Astellas Pharma US
Head of Patients in Partnership Programme, GSK
Public Involvement Lead, Health Research Authority
Global Head Of Patient Partnership, Roche
Patient Advocate, Individual/ Patient
Chief Patient Officer At Servier Group
Begoña Nafría Escalera
Patient Engagement In Research Coordinator- Hospital Sant Joan De Déu
Chair, HTAi Patient And Citizen Involvement Interest Group
Patient Advocate, EUPATI
Eleanor M. Perfetto
PhD, MS, Interim CEO and EVP, National Health Council
Global Patient Engagement lead, Gilead Sciences
Chief Executive Officer, National Health Council
Global Head of Patient Affairs, UCB
Costin (Radu) Ganescu
Vice President and Treasurer, European Patient Forum (EPF)
President, International Children’s Advisory Network (iCAN)
Synergist Programs Director
Chief Operations Officer
Senior Project Coordinator
Senior Project Coordinator