Patient Empowerment World Congress Europe

2nd Patient Empowerment World Congress 2026 Europe

Part of the Patient Centricity & Collaboration Series

“Connecting Patients, Clinicians, Industry and Policymakers to Transform Healthcare Through Partnership, Innovation and Empowerment.”

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Patient meets Innovation & Collaboration

Patient empowerment and understanding to inspire and create a meaningful impact.

Introduction
Insight
Who Should Attend

FACILITATE LIVE is very pleased to welcome you to our upcoming 2nd PATIENT EMPOWERMENT World Congress 2026 Europe. The congress focuses on “Connecting Patients, Clinicians, Industry and Policymakers to Transform Healthcare Through Partnership, Innovation and Empowerment.”

Patient empowerment refers to enabling individuals to gain the knowledge, skills, confidence, and authority to actively participate in decisions about their health and healthcare. Rather than being passive recipients of care, empowered patients become informed partners who collaborate with healthcare professionals to manage their conditions, make treatment decisions, and improve their overall well-being.

Traditionally, healthcare systems followed a paternalistic model in which clinicians made most decisions for patients. Today, however, there is growing recognition that patients who understand their health conditions and engage in their care are more likely to achieve better outcomes. Patient empowerment, therefore, shifts healthcare toward shared decision-making, transparency, and respect for patient preferences, values, and lived experiences. A fundamental aspect of patient empowerment is access to clear and reliable information. Patients need understandable guidance about their diagnoses, treatment options, potential risks, and expected outcomes. Health literacy plays a crucial role in enabling individuals to interpret this information and navigate complex healthcare systems. When patients are well informed, they can make better decisions and participate more confidently in discussions about their care.

Involving patients in treatment decisions and ensuring they understand their care plans significantly improves adherence to prescribed medications and therapies. By combining shared decision-making with comprehensive patient education, individuals can choose treatments that align with their needs and lifestyles. This collaborative approach leads to improved health outcomes, quicker recovery, reduced anxiety, and a greater likelihood that patients will adopt healthier lifestyles and actively monitor their conditions.

Patient empowerment is particularly important for people living with chronic diseases, where self management plays a key role. Empowered patients are more likely to monitor symptoms, manage medications effectively, and take preventive actions to maintain their health. Healthcare providers support this process through education, coaching, and digital tools that help patients track and manage their well-being.

When patients feel heard and respected, it strengthens their relationship with healthcare providers and encourages open communication and trust. This engagement is also essential for the pharmaceutical and life sciences industries. Patient insights help identify unmet needs, improve the design of clinical trials, and guide the development of therapies and support programs that better reflect real patient experiences. Patients who are actively involved in research are also more likely to participate in clinical studies and remain engaged throughout
the process.

Patient empowerment also supports ethical principles by respecting patient autonomy and enabling individuals to make informed decisions about their health. By ensuring that all patients have access to information, resources, and support, empowerment can also help address health disparities and promote greater health equity.

The two-day Congress will bring together stakeholders across healthcare, pharmaceuticals, patient advocacy, research, and policy, as well as patients and caregivers themselves. It will explore the growing importance of patient empowerment and its implications for both patients and the life sciences industry, with the goal of fostering meaningful dialogue, collaboration, and more patient-centered healthcare systems.

We look forward to meeting you at the Congress!

Sincerely yours,

Jocelyn Raguindin
Conference Director
Facilitate Live

GAIN LATEST INSIGHTS ON:

By the end of this two-day congress, participants will be able to:

Explain the principles of patient empowerment and patient-centred care and their impact on improving health outcomes, patient satisfaction, and healthcare system efficiency.
Apply strategies to improve health literacy and patient education, enabling patients to better understand their conditions, treatment options, and care pathways.
Integrate shared decision-making approaches into clinical and care practices to ensure treatment plans align with patient values, preferences, and lifestyles.
Identify effective methods to support patient self- management, particularly for individuals living with chronic diseases, through education, digital tools, and care coordination.
Assess how patient insights and lived experiences can inform healthcare service design, improving care pathways and overall patient experience.
Evaluate the role of patient advocacy groups and community organisations in advancing patient engagement, policy influence, and healthcare innovation.
Examine strategies for incorporating patient perspectives into clinical trial design and drug development, improving recruitment, retention, and research relevance.
Explore the use of real-world evidence and patient- reported outcomes to better understand treatment effectiveness and inform healthcare decision-making.
Analyse how digital health technologies—such as telehealth, wearables, and patient portals—can empower patients to manage their health and improve access to care.
Recognise opportunities for the pharmaceutical and life sciences industries to build meaningful partnerships with patients, enhancing trust, transparency, and collaboration.
Identify best practices for developing patient support programmes that improve medication adherence, disease management, and quality of life.
Assess approaches for addressing health inequalities and improving access to care, ensuring patient empowerment strategies are inclusive and equitable.
Develop cross-sector collaboration strategies among healthcare providers, industry, researchers, policymakers, and patient organisations to advance sustainable patient-centred healthcare systems.

WHO SHOULD ATTEND?

This Congress is beneficial to patients, pharmaceutical, biotech companies, researchers, physicians, patient advocacy groups, regulatory agencies, technology, and healthcare companies.

Network with Presidents, Heads/Chiefs, VPs, Directors, and Managers in the area of:

Patients
Patient Engagement
Patient Centricity
Patient Empowerment
Head of Patient Engagement
Patient Services
Engagement Strategy
R&D Patient Engagement
Medical Affairs
Regulatory Affairs and Policy
Patient Support and Patient Engagement
RWE, and Data Management
Quality and Compliance
Clinical Development
Programme Management
Supply Chain Management
Patient Access
Clinical Research
Global Head, Digital Accelerator
Patient Engagement & Portfolio Strategy
Patient Support Strategy & Insights
Patient Experience

Medical Affairs, Global Patient Advocacy & Alliances
Government Policy and Advocacy
Digital Patient Experience Lead
Clinical Operations
Clinical Insights and Experience
Head of Strategy, Access Services
Vice President, Site Collaborations and Patient Centricity
Head of Neuroscience
And much more...

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Key Industry Expert Speakers 2026

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Schedule

Content Rich Program Agenda! Featuring Keynote Presentations, Stream Sessions, Panel, and Round Table Discussions.

Day 1 14/10//2026
Day 2 15/10//2026

08:00 am - WELCOME COFFEE & REGISTRATION

08:30 am - CHAIRPERSON’S OPENING REMARKS

Anthony Cunliffe, National Lead Medical Adviser, Macmillan Cancer Support

BUILDING THE FOUNDATION OF PATIENT EMPOWERMENT

8:40 am - OPENING KEYNOTE PANEL: The Future of Patient Empowerment: From Engagement to True Partnership

Shift in Healthcare Systems: Examining the transition from provider-centric to patient-centered models.
Patients as Partners: The evolving role of patients in care, research, and innovation.
Stakeholder Collaboration: Building trust, transparency, and shared accountability.
Empowerment Drivers: The impact of digital health, policy, and education on patient empowerment.

Moderator:

Panelists:

Dan Farrow, Head of Community Engagement, Breakthrough T1D

Sailaja Maganti, Founder, Prurigo Nodularis International Charity

Kayuri Odedra, Associate Director, Patient Inclusion, EMEA Region, Abbvie

9:25 am - OPENING KEYNOTE: Building public trust in use of health data for research

What’s the benefit of using health data for research?
How can the pharmaceutical industry and patients work together to give people access to clear and reliable information about use of health data?
What safeguards matter to patients?

Janet Messer, Director of Health Data and Digital Policy, ABPI
Caleb Meath, Innovation and Research Policy Manager, ABPI

9:50 am - PLENARY KEYNOTE: Are we really patient centric? More or less?

Benchmarking report on quantifying what is unquantifiable – patient centricity
Sharing best practices of patient empowerment and engagement across pharma
How digital channels, platforms impact shared decision making and ultimately improve lived experiences?

Gabor Purman, Patient Advocacy Director, Kyowa Kirin

10:15 am - MORNING NETWORKING REFRESHMENTS

11:00 am - SPOTLIGHT PRESENTATION: Generative AI as a Patient Empowerment Tool: How can we ensure that AI strengthens, not replaces, the patient voice in healthcare?

Analyzing how generative AI enhances patient education and decision-making.
Comparing the accuracy and safety of AI health information against traditional resources.
Researching patient trust and the use of AI health assistants in routine care.
Establishing frameworks for transparency, bias, privacy, and regulatory oversight.

RESERVED

11:30 am - SPOTLIGHT PRESENTATION: Patient Support Programmes That Deliver Real Impact

Designing programmes around patient needs: Ensuring that the patient experience is at the heart of every initiative.
Measuring engagement and outcomes: Implementing robust frameworks to track the effectiveness and reach of your support services.
Partnerships with healthcare providers: Strengthening collaborations to ensure seamless integration and improved patient care.

12:00 pm - SPOTLIGHT PRESENTATION: Patient Co-Design of Clinical Trials: Evidence, Methods, and Outcomes

Impact of patient involvement on trial design, recruitment, retention, and participant experience.
Best practices for incorporating patient perspectives into endpoint selection and study protocols.
How co-designed trials improve the relevance and applicability of research findings to real-world patient needs.
Develop standardized frameworks for measuring the value and effectiveness of patient engagement throughout the clinical research lifecycle.

12:30 pm - PLENARY SESSION: Creating Patient-Centred Care Pathways.

Mapping the patient journey: Evaluating the process from initial diagnosis through to long-term care.
Identifying unmet needs: Pinpointing specific requirements that are currently not being addressed.
Integrating multidisciplinary teams: Coordinating various care teams to ensure a cohesive approach.
Redesigning services: Utilizing patient insights to improve and restructure service delivery.

Rebecca Lisle, Head of Patient Advocacy EU/INT, Jazz Pharmaceuticals

1:00 pm - NETWORKING LUNCH

PATIENT VOICE IN HEALTHCARE DESIGN & INNOVATIONS

2:00 pm - SESSION CHAIR OPENING REMARKS

Gunnar Schroefel, Sr Director & Head of Oncology Patient Advocacy, Daiichi Sankyo Europe & Canada

2:05 pm - The Girl Who Defied Science Is Redefining Healthcare

The Journey of a Child who was not supposed to be alive long enough to thrive in society
The moment that changed my life forever
Creating a movement for patients to gain confidence

Anjana Pindoria, Founder, I am Patient

2:30 pm - SPONSORED SPOTLIGHT: Designing Clinical Trials Around Patient Needs.

Reducing patient burden within clinical trials.
Implementing remote and decentralized trial models.
Strategies for improving patient recruitment and retention.
Strengthening collaboration with patient advocacy groups.

2:55 pm - From Insight to Implementation: Turning Patient Perspectives into Real-World Impact

Moving beyond “tick-box” patient engagement to meaningful partnerships
Translating patient insights into actionable changes in clinical practice and trials
Common gaps between patient input and implementation – and how to close them
The role of patient organisations and structured engagement models
Building sustainable cross-sector collaboration between patients, industry, and healthcare systems
Measuring the impact of patient involvement in real- world settings

Lisbeth Snede, President, PiCC United

3:20 pm - AFTERNOON NETWORKING REFRESHMENTS

4:00 pm - Building Meaningful Patient Partnerships: From Industry Intent to Real-World Impact

From insight to action: closing the gap
Barriers to true patient partnership in pharma
Embedding patients across the full lifecycle (R&D to support)
Co-creation in practice: from touchpoints to continuity
Trust and transparency as enablers of collaboration
Measuring impact: from activity to patient value

Joana Pina, Patient Advocate, President, CBP Portugal

4:25 pm - Using evidence and guidelines for effective advocacy

Advocating for yourself or others is always a hard to navigate
Having strong, peer reviewed evidence available during consultations greatly assists the discussion, leading to a shared care plan.
Care that feels as if each party is equal is more effective and allows the individual to feel in control.

Carl Lander, Research Director, Pyruvate Kinase Deficiency International Alliance

4:50 pm - Not Built for Rare—Addressing Inequity in Rare Disease Care.

Tabby’s story as a lens: A journey through two rare diagnoses that reveals how the system is not built for rare conditions.
Where inequity shows up: Delays, missed opportunities, and fragmented care that create unequal experiences for rare disease families.
The burden on families: How parents become coordinators and advocates, often carrying the system when it doesn’t work.
Privilege and persistence: Recognising that being able to keep going back and push for answers is a privilege— not all families can, and that deepens inequity.
From inequity to change: What needs to improve— earlier recognition, joined-up care, equitable access, and truly listening to lived experience.

Hannah Humphrey, Mum of a Child with 22q11 Deletion & TANGO2, Lived Experience Expert

DIGITAL HEALTH & TECHNOLOGY ENABLING PATIENT EMPOWERMENT

2:00 pm - SESSION CHAIR OPENING REMARKS

2:05 pm - Growing confidence in the shadows: empowering children and young people with EPP through a residential camp

Creating a safe environment tailored to the unique challenges of a light sensitive condition (erythropoietic protoporphyria – EPP)
Reducing isolation by connecting peers with shared lived experience
Building confidence and resilience through practical disease management strategies
Enabling experience of the positive physical and emotional benefits of being outdoors in nature

Liz Gill, CEO, The British Porphyria Association

2:30 pm - SPONSORED SPOTLIGHT: Telehealth and Virtual Care for Patient Access

Strategies to reach broader patient populations and reduce barriers to entry.
Integrating virtual and in-person services to create a seamless, cohesive patient journey.
Improving the quality and engagement levels of remote interactions.
Addressing the digital divide to ensure equitable access for all patients

2:55 pm - Beyond the Bleed: Patient voices shaping the future of von Willebrand Disease (VWD)

Exploring how lived experience reveals unmet needs, challenges long held assumptions, and drives meaningful transformation in diagnosis, management,
and support for VWD patients and their families.
How co‐created solutions, from shared decision making tools to redesigned care pathways, can improve outcomes and enhance quality of life.
It will also explore how patient involvement can address inequities, particularly for women and people with mild or variable symptoms whose experiences are frequently overlooked

Cat Wilder, Chair, VWD Alliance

3:20 pm - AFTERNOON NETWORKING REFRESHMENTS

4:00 pm - From Patient to Research Partner and Patient Advocate Trainer

Why I’m here
Our role as Patient Advocates within research as a partner
The Role of Patient Organisations

Dave Chuter, Chair, ICPV

4:25 pm - From Evidence to Empowerment: Unlocking Patient Engagement through Plain Language Research Summaries

The Engagement Gap: When Evidence Isn’t Understandable
Plain Language Summaries as a Strategic Engagement Tool
Building Trust through Transparency and Accessibility
Tackling Health Inequalities and Digital Exclusion
Enhancing Research Impact and Real-World Adoption

Karen Rockell, Director, UKODTRN

4:50 pm - What Patients Don’t Say and Physicians Don’t Ask: Closing the Hidden Gap in Healthcare Dialogue

Why communication gaps persist despite advances in medicine and patient-centred care
The “invisible layer” of consultations: what patients hold back and why
Power, time, and structure: systemic barriers to meaningful dialogue
Real-world patient and clinician perspectives from ongoing research
The impact of missed dialogue on trust, adherence, and outcomes
Moving beyond “engagement”: practical ways to enable better conversations across healthcare systems
What patient advocates, clinicians, and industry can do differently

Cornelia Reyes Acosta, Research Associate in Digital Health, King’s College London

5:15 pm - PANEL DISCUSSION: From Voice to Verdict: Making Patient Involvement Count in Policy

Impact & proof: Where have patient organisations demonstrably changed a policy position, pathway, or decision— what did “impact” look like, and how was it evidenced?
Health & Wealth: How to engage patients in industrial and economics policy debates that impact their health?
HTA & technical barriers: HTA is often a “technical nightmare” for patient communities—what would it take to make patient experience a first-class input to evidence generation and assessment?
Closing the loop: What does a credible “feedback loop” look like—how should institutions and industry show patients exactly what changed (or didn’t) because of their input?
Definition of success: If we reconvened in 12 months, what specific changes would prove we’ve moved from “input” to “impact”—fewer delays, less postcode variation, clearer decisions, better equity?

Moderator:

Victoria Hayes, Director, Public Affairs, Kyowa Kirin

Panellist:

Dr Lucy McKay, Chief Executive Officer, Medics for Rare Disease

Ron Hillel, Assoc. Director, Representation in Clinical Research, Global Patient Engagement, Novartis

6:00 pm - CHAIRPERSON’S CLOSING REMARKS

6:15 - 7:15 pm - NETWORKING DRINK RECEPTION

8:00 am - WELCOME COFFEE & REGISTRATION

8:30 am - CHAIRPERSON’S OPENING REMARKS

Robert Mitchell-Thain, Chief Executive Officer, PBC Foundation

Frida Forya, Senior Quality Solutions Leader – PDQ, Roche

HEALTH EQUITY, ACCESS & PATIENT ADVOCACY

8:40 am - KEYNOTE PANEL: Embedding Patient Empowerment Across Healthcare Systems

Examining the structures necessary to support and mandate patient involvement.
Strategies for implementing and expanding these models across diverse healthcare systems.
Exploring the vital role of partnerships between different stakeholders in the healthcare ecosystem.
Ensuring that patient engagement initiatives are accessible and representative of all populations.

Moderator:

Panelists:

Lara Bloom, President and CEO, The Ehlers-Danlos Society

Caroline Olshewsky, Chief Executive, Lupus UK

Ron Hillel, Assoc. Director, Representation in Clinical Research, Global Patient Engagement, Novartis

9:25 am - PLENARY KEYNOTE: From leaflet to lifeline: Reimagining Patient Information for a modern, empowered future

Patient information leaflets (PILs) have long been a cornerstone of safe medicine use, yet their impact is increasingly limited in a digital-first world where patients turn to online and social sources for guidance. This presentation will share how the MHRA is working collaboratively with patients, healthcare professionals, charities, and industry to co
design a user-centred approach to medicine information.
Attendees will gain insight into emerging policy thinking in the UK and internationally, and how technological innovation aligned with patient voices, can support safer use of medicines, more informed decision-making and achieve greater accessibility.

Smita Robinson, Head, Product Information Quality Unit, MHRA

9:50 am - Implementing a National Patient Empowerment Programme in Ireland

Vision
Underlying principle
Aim
Test

Tiberius Pereira, Co-founder, Patient Safety Ireland (PFPSI)

10:15 am - MORNING NETWORKING REFRESHMENTS

11:00 am - SPONSORED SPOTLIGHT: Decentralized Clinical Trials: Enhancing Access, Diversity, and Patient Experience

Assess whether decentralized trial models improve recruitment among geographically diverse and underrepresented populations.
Evaluate participant satisfaction, convenience, and retention in remote and hybrid clinical trial settings.
Investigate the quality, reliability, and regulatory acceptability of remotely collected clinical data.
Identify operational, technological, and ethical challenges associated with decentralized trial implementation.

11:30 am - SPONSORED SPOTLIGHT: Modernizing Patient Recruitment, Enrolment, and Retention in Clinical Trials

Managing trial timeline delays caused by the intensifying competition and increased demand for eligible participants
Implementing flexible participation options and simplified protocols to improve enrolment and conversion rates
Strategies in place to support clinical sites managing rising workloads and to mitigate patient attrition risks
Utilizing predictive analytics and AI as essential tools for optimizing patient targeting and preventing dropouts

12:00 pm - SPONSORED SPOTLIGHT: Doing patient engagement differently to achieve health equity

This session looks at what it really means to do patient engagement differently in ways that reach communities who are too often left out of health research.
We will share practical, creative and culturally grounded approaches to gathering genuine insights, sharing outreach, and building trust with underrepresented communities and why these matters for making clinical trials and health research more inclusive and effective.

Sneha Mojumdar, Projects and Partnerships Manager, Egality Health
Alidor Gaspar, Patient advocate, Artist

12:30 pm - Building patient participation engines to drive care system transformation*

Integrating patient insights from the initial discovery phase through to post-market engagement.
Strengthening partnerships with patient advocacy groups to better align goals.
Improving communication channels to ensure greater transparency for all stakeholders.
Developing sustainable strategies to provide ongoing support for patients.

Marta Lago, Programme Co-lead, Healthcare Systems Transformation, The Care Lab

1:00 pm - NETWORKING LUNCH

PHARMA & LIFE SCIENCE DRIVING PATIENT-CENTRIC INNOVATION

2:00 pm - Building Trust Between Pharma and Patients, Addressing the Current Industry Landscape

Establishing clear channels of information to foster long-term patient relationships.
Implementing robust standards for compliant and patient-centric interaction.
Developing proactive strategies to counteract inaccurate health information.
Clearly articulating the tangible benefits of pharmaceutical innovation and care.

Steve Clark, Founder and Patient Advocate, Strive for Five

2:25 pm - Empowering patient co-authorship in scientific publication; How, what, where and when...

What is happening with patient co-authorship
Practical examples on how to meaningfully engage
What does the future look like?

Sally-Anne Dews, Health Equity Publications SpecialistChief Medical Affairs Office, Pfizer

2:50 pm - The Empowered Patient Is Still Invisible: Why Digital Health Fails Where Measurement Stops

Patient empowerment often fails because healthcare still measures only a fraction of what drives real-world outcomes
Digital health can make the “invisible” visible by capturing behaviour, context, and early signals between visits
What needs to change for empowerment to translate into better access and outcomes at scale?

Richard Cassidy, SVP – Rx+ Business Accelerator, Astellas Pharma

3:15 pm - AFTERNOON NETWORKING REFRESHMENT

3:45 pm - Head of Global Patient Affairs in Oncology

Opportunities for Servier to build meaningful partnerships with patients through a patient-centric operating model, including Global Patient Advisory Councils
How patient insights and lived experiences can inform Servier’s strategic plans

Delphine Nicolas, Head Of Global Patient Affairs – Oncology, Servier

4:10 pm - Beyond Patient Centricity: Generating the Evidence Needed to Demonstrate the Full Value of Medicines for Patients, Caregivers, Healthcare Systems and Society

Medicines for Patients, Caregivers, Healthcare Systems and Society
Why patient-centred evidence generation is essential to demonstrating the full value of medicines.
Moving beyond traditional clinical endpoints to outcomes that matter to patients and caregivers.
The role of meaningful patient involvement throughout the evidence generation lifecycle.
Considering broader societal value, including the contribution of better health to productivity, economic resilience and sustainable healthcare systems.
Practical examples of international multi-stakeholder initiatives advancing patient-centred evidence for HTA and
pricing and reimbursement.

Jose Diaz, Global HEOR – Health Systems Economics & Value of Innovation Lead, Bristol Myers Squibb

4:30 pm - CLOSING PANEL DISCUSSION: Future Models of Patient-Centred Healthcare: Translating Empowerment into Measurable Action over the Next Decade

Understand how to leverage digital tools and clinical data platforms to improve workflows, maximize trial efficiencies, and enhance outcomes.
Discover strategies to align public and private efforts to fund sustainable innovation ecosystems and market access.
Acquire techniques for developing user-centric portals and wearable integrations for direct health management and true centricity.
Master the ability to establish shared accountability frameworks and metrics (PROMs/PREMs) to track systemic progress and demonstrate therapeutic value

Moderator:

Panelists:

5:15 pm - CHAIRPERSONS CLOSING REMARKS REMARKS and CONGRESS TAKEAWAYS

Robert Mitchell-Thain, Chief Executive Officer, PBC Foundation
Frida Forya, Senior Quality Solutions Leader – PDQ, Roche

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Testimonials

what people say

Thank you for a good experience with the PARADIGM Global Events… very high level, very good Organization, we overpassed our expectatives, we will be pending for another congress related to pharmaceutical and biotech… we learned a lot, and i think that the content of agenda was state of the art, thank you again.

Salvador Berrios

ERP/ CRM / Product Configurator Manager

The consistently high quality of international faculty was most impressive. It was also obvious that they were carefully chosen not only for their particular expertise but also for their ability to communicate the subject matter to clinical and non-clinical participants alike. As market access consultant for pharma clients of various sizes, I now feel much better prepared to explain the nuances & dynamics involved in bringing their products to market. In addition, I am in a much better position to intelligently advice my clients & help them set realistic expectations

Thomas Martin

Associate Vice President, VCGA - Quintiles

I was impressed with the organization of this event. I attend many conferences per year and find the organizers on site to be detached and not focus on good service to the delegates. This team was even providing weather forecast warning to ensure everyone was aware and made appropriate plans. Well Done.