PFMD Annual Report 2023
Patient-Centered Health Systems:
Achieving Impact Together
Patients' and caregivers' perspectives are the driving force behind innovation and transformative change in the healthcare system.
At PFMD, our mission is to improve global health by co-designing healthcare WITH patients.
We bring together initiatives and best practices that integrate the patient’s voice, accelerating the creation and implementation of an effective, globally standardized framework that engages patients as partners.
This framework, supported by the tools, services, and resources we provide, is adopted and championed by a diverse array of stakeholders across the healthcare spectrum (patient advocates & organizations, industry, regulatory & HTA agencies, researchers, health professionals, philanthropic organizations, etc.), making patient engagement (PE) a shared commitment.
In 2023, the achievements of our community have been impressive. The Patient Engagement Open Forum (PEOF), for example, has become a cornerstone event where global stakeholders convene to co-create impactful solutions.
This year, over 1,200 participants joined key online and in-person sessions that have sparked real change in areas like clinical trials innovation, PE impact in the investment community, advocacy, PE in women’s health, and more.
The collective efforts of our members have also driven progress in digital health and data, initiating the development of a framework for PE integration in digital solutions development that is setting new standards for patient involvement in this rapidly evolving field.
PFMD membership growth
and expanding collaborative network
None of this would have been possible without our, the ever-growing active community of opinion leaders, supporters and sponsors that make all of this impact possible.
We extend a warm welcome to the new members joining PFMD in 2023:
Special thanks to all the organizations that continued their unwavering support and contribution in 2023:
Achievements
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The focus of this initiative in 2023 was on communicating the importance and value of integrating Patient Engagement and Patient Experience Data (PED).
This is needed to drive meaningful evidence generation and optimal decision-making to achieve better health outcomes and improved health systems.
Throughout 2023, in addition to the development of a Global PED Navigator instructional video, the PE & PED collaborators advocated for the integration of patient engagement and PED in multiple healthcare settings.
Consolidated community responses to various public consultations supported this effort, including submissions to:
FDA request for Information and Comments on Methodological Challenges Related to Patient Experience Data
CIOMS Working Group XIII draft report on real-world data and real-world evidence in regulatory decision-making
EUnetHTA 21 Public Consultation on deliverable D6.4.1 External Guidance with EMA
WHO public consultation on Guidance for Best Practices for Clinical Trials
Moreover, significant dissemination efforts for wider community engagement resulted in presentations by PFMD members at the following conferences, in addition to several presentations made by project collaborators:
Global PED Navigator presentation
with IPSEN and Novartis
Chief Patient Officer Summit
Global (USA, July 2023)
Several PEOF sessions to advance the integration of PE & PED for evidence generation and decision making:
In-person PEOF: Enriching Healthcare Evidence Generation and Decision-Making: Integrating Patient Experience Data and Patient Engagement
Our peer-reviewed publications further advanced our 2023 objectives.
The global landscape review (see below) of the increasing consideration of PE and PED by regulatory and HTA bodies helped to support dialogue between PE functions and other organizational departments to demonstrate the importance and value of PE and PED. The Global PED Navigator publication further clarified and structured PED with a focus on starting with what is meaningful and important to patients.
PE & PED Global Landscape review peer-reviewed publication,
live in the Therapeutic Innovation & Regulatory Science (TIRS) Journal
Global PED Navigator
publication available in the Research Involvement and Engagement journal
PFMD’s partnership with the National Health Council and APx was strengthened through exploration of a Patient Experience Dossier aimed at streamlining and harmonizing the generation and use of patient experience data. This concept was presented by PFMD and the partnering organizations at ISPOR (Copenhagen, November) and will continue to be developed and piloted in 2024-2025.
Special thanks to our 2023 sponsors who made all this work possible:
The goal of this initiative is to increase intelligence around patient engagement activities within and between organizations and empower the PE community with evidence, learning and materialised value proposition.
To date, the collaborators of this project have worked to co-create tools and resources that are applicable at the initiative level that facilitates the development of a monitoring to learn strategy (monitoring PE activities to generate learnings on performance) throughout an organization. This includes the Metrics Selector and the progression of a Feedback Tool.
Pilots for the Metrics Selector were initiated with two industry members to support the refinement of a set of metrics that could be used to monitor a PE initiative and evaluate PE from an organizational perspective. Among others, these pilots showcase the Metrics Selector's role in shaping the development of an organizational PE framework and its application in a PE initiative.
Further co-creation and communication of the value of metrics and monitoring to learn occurred at the in-person PEOF session,
Unlocking the Power of Patient Engagement: Exploring PFMD Metrics for Impactful Measurement and Monitoring.
This session delved into the importance of establishing effective monitoring strategies to capture the quality and the impact of PE initiatives.
The Feedback Loop working group established guiding principles to support the patient community in providing standardized feedback.
They contributed to the co-creation of a draft resource to enhance feedback on PE initiatives.
This tool, to be finalized in 2024, aims to integrate seamlessly with existing resources and PE planning tools. This can act as a catalyst for change and improve PE processes within an organization.
Further dissemination occurred through the in-person PEOF session, Closing the Loop: Maximizing the Impact of Patient Engagement Monitoring through Effective Feedback Loops. There were discussions related to the integration of feedback in research, utilizing patient input for process enhancement, and driving PE outcomes.
The vision for this initiative is for PE to be recognized as a strategic sustainability commitment that supports investor decision-making for improved patient, economic and societal outcomes.
In 2023, we focused on maximizing the current window of opportunity to strengthen interest amongst key stakeholders (including the investment community) about the value of engaging patients for meaningful product development and informed investment decision making.
The projects showcased a strong commitment to community engagement and advocacy, through activities such as:
Presentation at EFPIA Patient Think Tank meeting and at Patients as Partners.
PEOF sessions held to advance the alignment between sustainability, investors and impact:
Better ESG strategies are made with patients: A pathway to success
a virtual PEOF session (215+ registrations) resulted in increased project interest and a draft framework of roles and recommended PE metrics to be considered by the investment community.
The power of patient engagement in sustainable healthcare practices: driving better patient outcomes through investor value
focused on the role of patient engagement in improving patient health outcomes, sustainability performance, and investor value.
Editorials that delve into the intricate relationship between investments, patient engagement, and sustainability within the healthcare sector
Engaging presentations at the Milken Institute with Gilde Healthcare
Enhance relationships with the investor community, with a particular focus on strategies to amplify the patient voice in the fund allocation process.
The in-person PEOF workshop produced a Stakeholder Expectations Matrix, exploring the role of patient engagement in improving patient health outcomes, sustainability performance, and investor value, with perspectives from the patient, industry and investment communities.
Based on working group suggestions and insights, we developed a Landscape Analysis of PE Integration within Sustainability Strategiesto identify industry trends and best practices.
To drive collaboration between patients and investors, efforts are under way to create resources to build capacity for patient engagement within the investment ecosystem.
Special thanks to our 2023 funding partners who invest in this collective work:
Increasing systematic engagement with patients for better health outcomes
These two projects explore the role and impact of patient engagement in early research and in the post-launch phase, including in a clinical practice setting where patients, healthcare professionals, and industry Medical Affairs representatives could find appropriate common ground to improve the patient experience.
Early discovery
We published exploratory calls to identify best practices from piloting of the How-to Guide, as well as ongoing efforts to determine the role of institutions and public funders in this space.
Members of the PE community were invited to submit initiatives for the Made with Patients Award of 2024. Funding agencies aiming to engage patients in grant processes were identified and invited to PEOF 2024. This provided opportunities to kick-start the transformation of the grant funding landscape to facilitate early engagement in academic settings.
Post-launch
Possible working group themes/activities, and their connection to real-world data, have been identified. Next steps will be assessed based on the value these activities could bring to all stakeholders.
The MAPS EMEA presentation and workshop increased awareness of PFMD tools and resources and inspired Medical Affairs professionals to play a greater role in PE activities in post-launch.
There are ongoing efforts to map case studies, resources and initiatives for key post-launch topics, including the integration of the real world data in the Patient Engagement & Patient Experience Data project.
Important conversations took place around the role of PE in access and health technology assessments
Making PE happen with the co-created Patient Engagement Training program
The goal of the training is to promote greater awareness and widespread adoption of PE basics and good practices to a wide audience. It includes providing support to organizations in integrating the training internally. We also gather feedback on how to take the training to the next level.
37,963*
Total registrations (from all levels including Medtech)
24.67%
Growth in registered users compared to October 2022
*On PFMD’s Learning Management System. The real number, including all our members deploying the training across their organizations, is significantly higher, but no official reporting has been put in place.
Key 2023 achievements
Developing a community for capacity building in patient engagement through:
A newly launched Patient Engagement Training group,
where sponsors shared their experiences with the training, lessons learned, current gaps and needs, and the future of patient engagement.
Organizing an in-person PEOF training session with around 30 participants
Breaking Barriers: Educating all Healthcare Stakeholders through Patient Engagement Training – collecting valuable insights that are shaping the future direction of the project.
Expanding the reach of the training with
The Chinese version
of the training has been completed and launched.
Japanese translations for Level 1
short version and long version have been initiated.
Launching a marketing campaign
to promote training, driving 200+ new sign-ups and reaching over 200,000 potential participants.
New organizations have also helped expand the impact of training. In 2023 we
Started onboarding Astrazeneca
as our newest sponsor.
Supported Boehringer Ingelheim, Edwards and Biomarin
in deploying Training Assets.
Special thanks to the contributors that help invest in the development and dissemination of the training, internally and also externally with the open and free version:
Bringing PE to the MedTech Industry by sharing good practices and adapting an established suite of tools
PFMD and contributors are building on previous efforts made by companies and patient organizations to adapt PFMD tools to the Medtech ecosystem such as the Patient Engagement Quality Guidance, Synapse and Reference contracts for collaboration with patients that were initially available only for the pharmaceutical industries.
Some of the notable milestones of 2023 included the launch of new tools for the community:
Launch and promotion
of PE MedTech Training and its Communications Toolkit.
A collection of MedTech good practices
added to Synapse.
Moreover, the team focused on advocating for a wider spread of patient engagement practices in the medtech community via:
A PEOF virtual session with 159 participants
on “Building the Bridge from Pharma to MedTech with Patient Engagement.”
A presentation at the AdvaMed
working group meeting, with 110 people invited.
Participation in a roundtable
with HealthXL in Boston with over 30 leaders in medical devices and digital health.
Beyond new tools and advocacy efforts, PFMD’s medtech community looked to the future to systematize patient engagement practices in this sector. Some of the notable 2023 efforts included:
A Patient Engagement in Medtech Roadmap 2023-2024
was co-created and validated by the working group.
Work began on a landscape analysis
by mapping resources, initiatives and case studies. The aim is to build the value proposition of patient engagement and understand the current challenges, gaps and what is next.
The goal of this work is to support and scale capacity and capability for patient engagement in Asia, including the sharing of PE resources and best practices, while spreading awareness through the CORE and CAPE networks.
The Japanese version of the Patient Engagement Quality Guidance
has been completed, thanks to our partners, JPPaC.
To spread awareness about the translation work and empower the local community
of patient engagement enthusiasts, JPPAC organized a PEOF virtual session in Japanese on the 17th of Oct. The output is available here.
Their work has attracted the interest of RCA,
who are working on a short case study for an APOA report, highlighting international collaboration to support better patient engagement.
The Patient Engagement Synapse
our digital PE ecosystem was made available in Japanese thanks to our partners contribution
A virtual session was organized by JPPAC during the in-person PEOF 2023.
The theme - cases, opinions, and insights on the use of Decision Aid presented by patient advocates, medical professionals, and researchers who are leading Patient Engagement in Japan. Find out more here
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Discover the only global multi-stakeholder event for shaping the future of patient engagement
PEOF is a series of virtual and in-person events where top patient advocates, industry thought leaders, regulatory influencers and other stakeholders (such as researchers, healthcare professionals or philanthropic organizations) come together to co-create real solutions for the future of patient engagement.
2023 saw a successful in-person Patient Engagement Open Forum emphasizing the global expansion of PFMD's community, with:
over150
Participants
95 unique
Organizations
over 22
Countries
11diverse
Stakeholder groups
The intentions that makes PEOF unique
Diversity
The richness of views and opinions (“Une claque de diversité”).
Safe heaven
An environment where patients have their say and are really heard.
Unite
Bringing actors around the table that can make change happen.
Informality
A convivial atmosphere to break barriers & experience a community feeling.
New rules
A fresh playing field with engaging activities, inspirational sessions, games & more.
Beyond that, 9 PEOF virtual sessions were organized on topics including ESG strategies with patients, patient engagement in medtech, patient engagement excellence with the “Made with Patients” Award winners, fostering publications in patient engagement, building a framework for clinical trial participants, prioritizing women in health R&D, and PE & PED integration.
The PEOF Audience
As part of the PEOF expansion strategy, two PEOF webinars were organized in association with JPPaC, focusing on patient engagement practices and tools adoption in Japan.
PEOF Sponsors
Thank you to our Enablers of Lasting Change Members & associate members who make PEOF happen
PEOF Sponsors
Patient Engagement Patrons
With Virtual session Partners
Driving good practices and systemic change in remuneration for patient engagement with pharmaceutical companies
Building on existing collaborative work, this project has harmonized standard Global Principles and co-created a transparent methodology to support the determination of fair remuneration for the patient community for interactions with pharmaceutical companies.
The main highlight of 2023 was the launch in early April of the Fair Patient Engagement Planner on PE Synapse, a co-created tool to empower transparent dialogue on fair remuneration and drive good practice.
A piloting and implementation community was also kicked off to test the tool and drive adoption. The community has been meeting quarterly to share learnings on utilizing the Fair PE Planner and PFMD Fair Remuneration resources.
Significant efforts have been made on the dissemination and community adoption of the tool, including:
The organization of two workshops for the Global Skin Annual Conference
to support capacity building among their local members on fair remuneration.
Presentation of the project’s outcomes
at Patients as Partners on June 12th to raise awareness and promote adoption in the PE ecosystem.
Presenting PFMD legal, compliance and remuneration resources
at the Healthcare Ethics and Compliance Conference, Pharma Forum EMEA, and the EFPIA Patient Think Tank.
Quick reference for pharma-patient interactions to help stakeholders navigate local rules & regulations
The mission of this initiative is to support the complex task of navigating Country Codes of Conduct and other regulations that impact interactions between pharmaceutical companies. The PE Guidelines provide a quick reference to point users in the right direction.
In 2023 we have launched a new Guidelines cards:
In 2023 we have launched a new Guidelines cards:
The organization of two workshops for the Global Skin Annual Conference
to support capacity building among their local members on fair remuneration.
Presentation of the project’s outcomes
at Patients as Partners on June 12th to raise awareness and promote adoption in the PE ecosystem.
Presenting PFMD legal, compliance and remuneration resources
at the Healthcare Ethics and Compliance Conference, Pharma Forum EMEA, and the EFPIA Patient Think Tank.
Special thanks to our collaborators supporting this project:
Empowering newcomers and ambassadors by providing a reference point for patient engagement.
This project highlights the patient engagement initiatives and champions making systematic PE a reality globally. We celebrate those who are driving our field forward in medicines development, medtech development, digital health (and beyond). The awards provide participants with an opportunity to showcase their work, and rewards individuals and initiatives that went above and beyond in their effort to put the patient at the center of our health ecosystem.
The year began with a nomination campaign, where anyone from the community could recommend initiatives or champions for the award. In less than one month, we have received 140 nominations. A specialized jury was tasked with analyzing the nominations against the Patient Engagement Quality Criteria.
The award winners were announced during the 2023 in-person PEOF edition.
We celebrated 4 winning initiatives and 5 patient engagement champions.
Check out the results here: the award winners, the jury and more information about the awardees.
The first edition award winners shared their stories during a teaching moment at the PEOF session “Unlocking Global Patient Engagement Excellence”.
We also gathered our audience’s ideas about what they’d like to see at the next edition, already working towards the co-creation of the 2024 Made with Patients Awards.
PFMD and its members operate at the forefront of bringing patients to the table to shape healthcare, and 2023 has been a landmark year for our community.
The PFMD network's reach and impact have grown substantially, reflecting our commitment to fostering an interconnected ecosystem where patient voices shape the future of healthcare.
Our marketing channels reached a staggering
10,351,668
Individuals
185,108
Engagements, including likes, shares, interactions and website views.
This year, we saw 38,000 conversions, illustrating the strong interest in our tools, materials and services. The Synapse platform saw 1,075 new sign-ups, while the PEM Suite recorded 33,516 downloads. Additionally, 182 users actively engaged with the FAIR PE Planner, 874 downloads were made of PED publications, 619 of PE Country Guidelines, and 223 downloads occurred on PFMD.org. Our flagship event, the Patient Engagement Open Forum (PEOF), registered 1,271 participants, underlining the growing enthusiasm and involvement within our community.
Our interconnected ecosystem continues to expand, constantly reconnecting and engaging more individuals.
Currently, our PFMD network comprises 17,374 people, with an additional 4,079 individuals in our PEOF network. Our websites boast 16,267 active users, reflecting the community's vibrant engagement.
The Global Health Map and Network – shaping collective intelligence and making it actionable
Synapse aims to empower communities through a collaborative platform that maps existing initiatives, connects people and organizations, and collects best practices, learnings and resources from around the world.
2023 saw significant growth:
5,400+
Registered users.
90
An average of 90 daily sessions on the platform.
Not only that, but new features have also been developed:
New on-site notification system.
New on-site notification system.
Search engine optimization efforts.
Search engine optimization efforts.
The launch of the Patient Engagement Planner.
The launch of the Patient Engagement Planner.
Synapse hosted the Patient Engagement Awards
through a new system allowing users to nominate or vote for any entity on the platform.
Improved organization profile allows you to highlight your main resources, initiatives and events
and add your latest news articles so that the world knows about your work.
User Groups functionality for better connections and productive collaborations,
empowering users to interact and collaborate with their colleagues within the Synapse ecosystem.
Making Synapse available
in the French language across all ecosystems.
Coming soon in 2024
Spanish version of the platform and new group function that will allow you to create private discussion groups within your organization.
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Evolving towards a new distribution capacity for clinical trial information
The project focuses on addressing access to clinical trial information.
By co-developing a system to collect and distribute structured and enriched information on active clinical trials, we aim to make clinical trials more easily accessible to a more diverse patient community.
In 2023 the group focused on growing the community and engaging relevant stakeholders to make the vision happen.
Some notable results include:
Successfully onboarding
of new partners including Myeloma Patients Europe, Parkinson UK, Chiesi, CDISC, Novartis and JnJ.
Ongoing efforts
to leverage the learnings of the CTDN project to build and accelerate an IHI consortium of 25 partners that aims to make clinical trials more accessible to diverse patient populations.
An ongoing pilot,
with advancements in the development of the common data model, AI-parser and the pilot platform.
Community engagement efforts included:
Gathering crucial insights and deepening interest
in the projects from participants in the EFPIA/ CREG/ERAO Patient Engagement Meeting on April 20th and EFPIA Patient Think Tank on May 24th.
Leading a Patient Engagement Open Forum session
at the F2F event in June, collecting a wide range of insights that are informing the project direction of travel.
More information is available here.
Special thanks to our partners that made this work possible:
The project brings relevant stakeholders together to understand, define and align
on patient engagement best practices across drugs, devices and digital, while raising awareness and building a community of early adopters of PE standards for digital health and data.
In 2023 we focused on supporting systematic and meaningful PE in digital health, helping define the role of the patient community in the digital era, and including how PE can support the protection and management of digital patient data.
One of the main achievements in 2023 was the publication of the paper,Delivering Digital Health Solutions that Patients Need: A Call to Action, in the journal of Therapeutic Innovation & Regulatory Science (TIRS).
The paper highlights the fact that for digital health solutions to fulfill their potential, there needs to be a significant increase in early, meaningful and sustained engagement with the people they intend to benefit.
Moreover, the interviews for the stakeholders expectations matrix in digital health (SEM) have been completed. Their intermediate results were brought to an in-person PEOF in a session called Advancing PE in Digital Health.
The participants learned what stakeholders in digital health expect and need from each other to ensure better health outcomes. Based on these insights, they co-created possible future deliverables in digital health.
Towards the end of 2023, the digital health working group focused on creating a Patient Engagement in Digital Solutions Roadmap.
This effort leverages insights from our research in digital health to adapt established patient engagement resources, such as the Patient Engagement Quality Guidance, for digital applications. The goal is to develop a step-by-step framework that supports the integration of patient engagement throughout the lifecycle of digital health solutions development.
Financial Report
2,528,500 €
Turover
2,511,599 €
Project expenses
1,300,000 €
Membership fees
1,228,500 €
Specifically funded projects