8th PATIENT CENTRICITY & COLLABORATION WORLD CONGRESS 2026 EUROPE
A strategic approach prioritising the patient's needs, preferences, and values from drug development to treatment and beyond.
Millennium Hotel and Conference Centre Gloucester London
Day 2 - Thursday 26th February 2026
Stephen O’Farrell, Executive Director, Spectrum Science
Frida Forya, Senior Quality Solutions Lead. Roche
CHALLENGES & POTENTIALS OF PATIENT ENGAGEMENT
- Fostering community engagement and build trust
- Designing a patient-centric, inclusive trials
- Cultivating an inclusive research environment
- Leveraging technology and data
- Adopting regulatory requirements and institutional support
Moderator:
Ify Osunkwo, Chief Patient Officer Rare Disease, Novo Nordisk Rare Disease
Panellists:
Emily Pickering, Patient Engagement in Clinical Development Service Lead, NIHR Research Delivery Network
Faith Smith, Health Innovation Network, England
Ron Hillel, Associate Director, Clinical Representativeness, Patient Engagement, Novartis
Emma Sutcliffe, Founder, ISPEP
Anthony Mason, Chief Executive Officer , Sickle Cell Care Manchester
- Define “Diversity” in the context of EU and UK regulatory environment
- Provide information on the importance of assessing diversity based on disease area before study design and execution
- Share concrete examples of diversity in practice:
- MHRA analysis of community subgroups and their involvement in clinical trials.
- READI engagement with public’s representatives and why words matters: moving from diversity to representativeness
Frida Forya, Senior Quality Solutions Lead. Roche
Puja Myles, Director, Clinical Practice Research Datalink (CPRD), MHRA
- Why timing matters: Too early, too late, or just right?
- Striking the balance: Impact, ethics, and resources in tension
- Lessons learned so far: What real-world experience shows us
- Looking ahead: What needs to change for the future
Dr Liz Clark, Visiting Lecturer & Patient Engagement Theme Lead, King’s College London
This panel session brings together voices from across the world to explore the patient health journey and the role that clinical research can play along the way. Through personal stories and shared reflections, we will examine how experiences differ and where they converge, and consider what we can learn from one another to improve how research is designed, communicated and delivered.
This will be an engaging and interactive session, encouraging everyone in the room to share their perspectives, challenge assumptions and explore how listening to each other’s journeys can drive meaningful change. The intent is for attendees to leave with practical and actionable insights that they can apply to their own programmes, research initiatives or personal health journeys.
Moderator:
Keith Berelowitz, Founder/CEO, pRxEngage
Panellists:
Jenna Wheeler, Patient living with PBC
Caleigh Haber, CF patient, Founder, Fight2Breathe
Jamie Tierney, Father of a son with DMD, Founder, DMD Access & Innovation
Danielle Drachmann. Senior Patient Partnering Manager, Evidera, PPD, part of Thermo Fisher Scientific
- Understanding the emotional burden: What participants carry but protocols miss
- Building supportive trials: Practical, ethical, and operational considerations
- Case study insights: How structured support changed engagement and outcomes
- What’s next: Embedding psychological care as a standard, not an add‐on
Sumira Riaz, Patient Engagement/Health Psychologist Consultant, Founder, Unboxed Psychology
Glenn Darley, Patient Engagement & Advocacy Leader, Director, Rare Connections Consulting
- Gaining a deep understanding of the landscape
- Transforming processes and upskilling teams as foundational work
- Developing a strategic approach centred on partnership and co-creation
- Always learning on the journey
Stephen O’Farrell, Executive Director, Spectrum Science
Federico Fagà, Global Head of Patient-Centered Outcomes and Advocacy, Chiesi Group
- Practical ways to turn behavioural evidence into implementable solutions that address real barriers and unmet needs
- Structured approaches for integrating behavioural models, user insights and digital ecosystems to design engagement that is relevant across key patient journey touchpoints.
- Real-world examples of translating behavioural diagnosis into service design, content and measurement maps, showing how programmes can improve outcomes and patient experience without adding operational complexity
Dr Debbie Cooke, Head of Health Psychology, Atlantis Health UK
- How to turn the major challenges clinical trials and the pharmceutical industry is facing into solutions for future drug development.
- Learnings and take-aways from various patient engagement projects over the last year.
- What to do and not to do in order to succeed the best way possible with integrating the patient perspective into your clinical research project.
Rasmus Hjorth, Patient Engagement Director, James Lind Care
- Why PED matters now: Rising expectations from regulators, HTA bodies, clinicians, and communities to incorporate real experiences and outcomes into evidence generation and decision-making.
- From insight to impact: How PED is informing research priorities, clinical development strategies, regulatory dialogues, and value and access considerations.
- Real-world integration: Practical examples of how healthcare systems, organisations, and partners are embedding PED into ongoing learning cycles, care pathways, and everyday decision-making.
- A person-centred future: What it will take for healthcare stakeholders to consistently prioritise people’s needs, preferences, and values—from development to treatment and beyond—and how PED can anchor this strategic shift.
Hayley Chapman, Senior Program Director, The Synergist
- Jasmine will share how BMS’s Global Purpose & Patient Experience team is embedding patient voices, carers’ insights, and community trust into every phase of development and delivery of its medicines
- Drawing from her background in nonprofit advocacy and her leadership at BMS, she’ll explore how trust building enables innovation and advances both mission and purpose
- She will spotlight tangible enterprise tools, like BMS’s Universal Patient Language (UPL) and PEER programs, that translate empathy into access, and communication into clarity.
- The talk will include lessons learned from carers, medically underserved communities, and patient collaborators who have reshaped how BMS designs, speaks, and shows up.
- Jasmine will offer a human-centric lens on trial transformation, showing how purpose-driven decisions accelerate recruitment, improve retention, and deepen real-world impact.
Jasmine Greenamyer, VP, Global Purpose & Patient Experience, Corporate Affairs, Bristol Myers Squibb
- Timing Multistakeholder Collaboration Across the Innovation Lifecycle
- How Collaboration Works: Mechanisms, Models, and Mindsets That Enable Success
- What Good Looks Like: Defining Meaningful Patient Engagement in Multistakeholder Settings
- Breaking Silos: Aligning Diverse Stakeholder Priorities to Accelerate Impact
Federica Castiglione, Sr Director Patient Advocacy & Engagement EMEA, Menarini Stemline
- Leveraging patient input and real-world data to improve relevance, safety, and efficacy
- Designing patient-centric products: key challenges and opportunities
- Redefining stakeholder roles—from early development to real-world access
- Ensuring patient voices drive not only clinical trial design but also long-term treatment adherence and outcomes in diverse populations.
Panelists:
Gabor Purman, Patient Advocacy Director, Kyowa Kirin
Aude Roborel de Climens, PhD, Director, Scientific Services, Patient Centered Solutions, IQVIA Dr Debbie Cooke, Head of Health Psychology, Atlantis Health UK
- How can we move patient engagement from a checkbox to true co-creation and shared decision-making?
- In what ways does genuine patient engagement improve health outcomes and trust?
- What are the biggest barriers that prevent meaningful patient involvement?
- How can we effectively measure the impact of patient engagement beyond satisfaction surveys?
- Are we including diverse and underserved patient voices in our engagement efforts?
- How do we ensure patients are partners and collaborators, rather than just observers or token participants?
Moderator:
Emma Sutcliffe, Chief Patient Officer, ISPEP
Panellist:
Zack Pemberton -Whiteley, Patient Advocacy Executive Director, Autolus
Rasmus Hjorth, Patient Engagement Director, James Lind Care
Carl Lander, Director of Research, Pyruvate Kinase Deficiency International Alliance
Isabella Darbyshire, Specialist Commercial Services Manager, PECD, NIHR Research Delivery Network
Jean-Sébastien Gosuin, Founder, Curewiki
Stephen O’Farrell, Executive Director, Patient Engagement, Spectrum Science Frida Forya, Senior Quality Solutions Lead. Roche
