2nd Patient Empowerment World Congress 2026 Europe
“Part of Patient Centricity & Collaboration Series”
“Connecting Patients, Clinicians, Industry and Policymakers to Transform Healthcare Through Partnership, Innovation and Empowerment.”
Hilton London Kensington, London, United Kingdom
Day 1 - Wednesday 14th October 2026
BUILDING THE FOUNDATION OF PATIENT EMPOWERMENT
- 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
- 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
- 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
- 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
- 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.
- 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.
- 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
PATIENT VOICE IN HEALTHCARE DESIGN & INNOVATIONS
Gunnar Schroefel, Sr Director & Head of Oncology Patient Advocacy, Daiichi Sankyo Europe & Canada
- 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
- 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.
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- Why I’m here
- Our role as Patient Advocates within research as a partner
- The Role of Patient Organisations
Dave Chuter, Chair, ICPV
- 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
- 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
- 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:
6:15 - 7:15 pm - NETWORKING DRINK RECEPTION
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