How a community turned belief into infrastructure — and infrastructure into systems change.
Ten years ago, patient engagement (PE) was fragmented and fragile.
Today, it's becoming how healthcare defines quality, trust, and innovation, because thousands chose to build together, in the open, with patients.
PFMD's role has been to be the place to co-create standards, build capabilities, grow community trust, and keep the field visible. We focused on four compounding roles:
Standard setter
a safe & brave space to align and act (PEOF).
Community glue
co-created guidance and tools that define what "good" looks like.
Capability builder
open training and peer learning anyone can access and adapt.
Lighthouse
thought leadership and exemplars that keep PE on the system agenda.
Everything is open-access by design so good practice travels faster and farther — beyond any single organization.
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Each number represents trust built, systems opened, and patients shaping how healthcare works.
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Systems are shifting:
Regulators use co-created guidance to shape new standards.
Companies embed PE frameworks into strategy and governance.
Investors integrate patient perspectives into ESG and risk decisions.
Advocates leverage shared tools to push for meaningful change.
Health systems adapt PE resources locally, proving they work anywhere.
From projects to policy — patient engagement as infrastructure for healthcare innovation.
Patient engagement was still fragmented. Together, early adopters built the shared language, trust, and first practical tools to make engagement real.
Co-created the PE Quality Guidance (7 criteria that define what "good" looks like).
Published the first Book of Good Practices to capture real-world examples.
Launched Synapse, the first global mapping of PE people, organisations, and resources.
Founded the Patient Engagement Open Forum (PEOF) — a safe and brave space for collaboration.
Adapted core resources for MedTech companies and delivered the first conference session linking PE to ESG priorities.
Once the language was built, the community scaled it. Companies, regulators, and advocates began embedding structured engagement into their systems and training their people.
Expanded to 63 member organisations; co-created the Patient Engagement Management Suite (How-to Guides, Metric Selector, Global Patient Experience Data Navigator).
Rolled out the PE Training Program, reaching 38K learners and giving 500K employees access across 11 pharma companies, and co-created a dedicated MedTech adaptation in partnership with MedTech companies and patient organisations.
Launched the Made with Patients Awards to celebrate and benchmark excellence.
Adapted resources for MedTech and began linking PE to ESG and sustainability priorities.
Patient engagement became structural. The same principles now guide policy, regulation, investment, and innovation. PFMD evolved from convenor to enabler of new, self-sustaining initiatives.
Regulators and payers citing PE Guidance and PED Navigator in reflection papers and guidelines.
Investors incorporating patient perspectives into ESG criteria.
Health systems across Asia and Europe adapting PE tools locally.
Incubated the "initiation of new engines of change" including Clinical Trials Data Network (CTDN) and its contributions to IHI-READI, Patient Engagement Professionals Society (PEPS), Patient Movement Catalyst (PMC).
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The shared infrastructure we built together
Synapse maps people, organisations, projects, and tools — connecting
9,200+ individuals and 2,000+ organisations in 90+ countries.
"Synapse is the largest PE network I know — full of valuable contacts, stakeholders, and resources. For anyone starting work with patient communities, it's an indispensable resource."
Global Patient Affairs Director, Ipsen
The Patient Engagement Open Forum is the working forum where the field solves problems together — virtually year-round and annually in person.
8 editions, 5,500 attendees, 50+ countries, 120+ organisations
"PEOF has now become an unmissable annual event… more than just a forum, it's a collective movement, a space for learning, sharing, discovering new developments, and exchanging best practices."
AMAL, Morocco
Presented at PEOF, the Awards recognise initiatives that put patient perspectives at the centre of solutions.
470 nominations
"I'm deeply grateful to PFMD and the PEOF community for this recognition. I'm just one part of the puzzle, it's the collective effort that has brought us this far and will keep pushing patient partnership forward."
Patient and Public Strategy Editor, BMJ on winning the Made with Patients Award
A model that mirrors the ecosystem:
30–50% patient organisations, 30–50% industry, and ~20% HTA/regulatory/academia to ensure accountability and shared direction.
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We've proven that patient engagement works. Now it's time to make it universal — not a project, but how healthcare operates.
Strengthen standards in policy, practice, and evidence generation.
Build capabilities via training, shared intelligence, and peer learning.
Drive local adoption through country-level leadership and support.
Integrate PE into evidence so patient experience data informs decisions.
Co-create innovation across MedTech and digital health from the start.
Shape future value by linking PE to sustainability and investment metrics.
When citing, please reference as: "Patient Focused Medicines Development (2015-2025). 10 Years of Impact: The Decade We Built Patient Engagement Together."
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