- 25th - 26th February 2026
- Millennium Hotel and Conference Centre Gloucester London, UK
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.
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Co-located with the 2nd DECENTRALIZED & HYBRID CLINICAL TRIALS World Congress 2026 Europe
Patient meets Innovation & Collaboration
Patient empowerment and understanding to inspire and create a meaningful impact.
We are delighted to invite you to the 8th Patient Centricity and Collaboration World Congress 2026Europe, hosted by Facilitate Live. This two-day Congress aims to foster meaningful collaborations among industry professionals, advocacy groups, clinicians, researchers, and, most importantly, strategies and best practices for addressing challenges, embracing innovations, utilising new technologies, and implementing concepts that contribute to achieving patient-centric goals.
The congress theme, “A strategic approach prioritising the patient’s needs, preferences, and values from drug development to treatment and beyond,” underscores the critical importance of patient centricity and engagement in biopharmaceutical research and development, disease management, and the design of treatments, clinical trials, and other health solutions. True patient-centric solutions necessitate a collaborative endeavor with patients and their caregivers, involving their feedback and insights into medical conditions, experiences, needs, perspectives, and priorities.
Patient centricity necessitates a departure from traditional approaches, embracing diverse, patient centered perspectives. This involves several key aspects, beginning with patient-centric clinical trials and drug development, integrating patient insights into the design, evaluation, and manufacturing of therapeutic products. It also entails actively engaging patients in discussions and decisions concerning healthcare products and services. Patient centricity further emphasizes personalized care, tailoring treatments, communications, and support to individual patient needs.
This is complemented by improved communication, fostering clear, transparent, and accessible interactions between healthcare professionals and patients. Ultimately, patient centricity extends to prioritizing patient well-being, acknowledging emotional, social, and financial considerations alongside medical conditions.
While technology-driven advancements present challenges, they also create opportunities to enhance the patient experience by coordinating the health ecosystem around the patient. This requires reevaluating drug development and delivery to improve experiences and outcomes, and continuously adapting to meet the evolving needs of patients.
The industry has made significant progress in adopting a patient-centered approach, transforming the concept from a mere buzzword to a tangible goal. However, with the evolving healthcare model and ecosystem, driven by technological advancements and more engaged patients, achieving true
patient-centricity remains an ongoing quest and a steadfast commitment.
We look forward to meeting you at the Congress!
Sincerely yours,
Jocelyn Raguindin
Conference Director
Paradigm Global Events / Facilitate Live
GAIN LATEST INSIGHTS ON:
- Critical topics regarding patient centricity within the pharmaceutical and life sciences industry.
- Why it's imperative for our industry to fully embrace the patient-centric movement?
- We will delve into several key areas that are vital for its successful implementation.
- We will be exploring what patient centricity truly means for our sector.
- Why it's so crucial for the industry to actively participate in this shift?
- Patient-centric initiatives that have already demonstrated a significant impact.
- Successful strategies and best practices for managing patient centricity in healthcare.
- How we can develop and execute effective strategies to improve patient engagement and the benefits this engagement brings to the drug development and discovery process.
- Evolving challenges and key considerations in the ethical and compliant use of relevant data, and the potential value of providing access to this data to all stakeholders.
- How we can maintain mutually beneficial ongoing partnerships between patients and the industry.
- Overcoming the challenges in making clinical trials and drug development more patient-centered.
- Setting expectations through collaborations
- Understanding the role of researchers in bridging communication gaps
- This congress also focuses on practical strategies for developing a powerful brand with the patient at its core.
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:
- 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...
Key Industry Expert Speakers 2026
Emily Pickering
Specialist Commercial Services Lead, Patient Engagement in Clinical Development
NIHR Research Delivery Network
Isabella Darbyshire
Specialist Commercial Services Manager, Patient Engagement in Clinical Development
NIHR Research Delivery Network
Dr Liz Clarke
Visiting Lecturer and Patient Engagement Theme Lead
Centre for Pharmaceutical Medicines Research, Kings College London
Prof Guillaume Canaud
Head, Translational Medicine & Targeted Therapies Unit
Hôpital Necker Enfants Malades
Nadya Isack
Patient and Public Involvement (PPIE) Advocate, Founder
Empower Health Initiative CIC, Person living with Obesity
Van Zyl Engelbrecht
Head of Country Operations / Decentralised Clinical Trials & Innovation / Rare Diseases / Regulatory Affairs
Alexion Pharmaceuticals, Inc
Dr Sondra Butterworth
CEO & Founder
RareQoL (Rare Quality of Life) and EDIRA (Equality Diversity and Inclusive Research Association)
Schedule
Content Rich Program Agenda! Featuring Keynote Presentations, Stream Sessions, Panel, and Round Table Discussions.
Hayley Chapman, Senior Program Director, The Synergist
TRENDS & STRATEGIES IN PATIENT CENTRICITY AND COLLABORATION
- What are the main internal and external barriers to achieving genuine patient centricity?
- What are the key elements for creating an authentically patient-centric company culture?
- What are the challenges and opportunities in shifting to a patient-centric mindset?
- How can a patient-centric culture improve patient access and transparency?
- How can patients be meaningfully involved in the drug development process, from early research to post market surveillance?
Moderator:
Rosanna Forrest, Director, Patient Engagement, Spectrum Science
Panelists:
Tom Croce, Vice President, Global Patient Advocacy, Jazz Pharmaceuticals
Sarah Phillips, Vice President, IQVIA
Danielle Drachmann, Senior Patient Partnering Manager, Thermo Fisher Scientific
Daniel Newman, Patient Advocate, Trueheart International
Jasmine Malone, Group Director for Patient Engagement Content and Storytelling, OPEN Health
Maddie Yorke, Advocacy Services Senior Manager, PPD Clinical Research Services
- Many biotech/pharmaceutical companies are talking about ”Patient Centricity”, but how can a company actually operate in a patient-centric way to create meaningful value?
- Learn best practices to transition from being product centered to patient centered
- Discuss strategies to embed patient centricity throughout your organization.
Gabor Purman, Patient Advocacy Director, Kyowa Kirin
The three acts of dignity by design
- The human imperative why dignity must be our north star. Without dignity engagement becomes more transaction than a true sustainable partnership
- The systemic challenges and why intentions are not good enough: Moving away from piloting endlessly to institutionalizing proactively. Pilots miss the three pillars of trust, transparency and equity
- The future by Design: the right blueprint for meaningful sustainable partnerships
Ify Osunkwo, Chief Patient Officer Rare Disease, Novo Nordisk Rare Disease
- The importance of patient perspectives in regulatory processes
- The benefits of prioritising patients’ needs and preferences in drug- and device-related decisions
- The value of understanding public and patient acceptability of risk and benefits
- Influencing medical product developers to involve patients in their development pathway
Lawrence Tallon, Chief Executive Officer, MHRA
- Tolerability is a hot topic in medicines development, and the evaluation of symptomatic adverse events and their overall tolerability has been recommended by the US FDA in oncology, and also recently by the EMA in their draft reflection paper on Patient Experience Data.
- Measurement of tolerability tends to focus only on experiences and overall burden of adverse events, as recommended by the FDA as part of the five core outcome measures in cancer trials.
- IQVIA collaborated with the US Cancer Support Community (CSC) to integrate an online patient survey into their existing Cancer Experience Registry to better understand how people with cancer define treatment tolerability and key factors they consider. Findings from the survey suggest that treatment tolerability is broader than just adverse events.
- This session will function as a discussion – the presenters will provide some background information and results of the survey, with the remaining time dedicated to hearing from participants about how they personally define treatment tolerability, and how it should be evaluated in clinical trials and routine care.
Aude Roborel de Climens, PhD, Director, Scientific Services, Patient Centered Solutions, IQVIA
- The NIHR partners with over 100 charities and community groups when recruiting to its public involvement activities.
- This has increased the numbers, diversity and representativeness of the public who take part in PPIE activities, including the often overlooked ‘research naive’ voice.
- Our challenge is how we continue to develop these partnerships in a fair and reciprocal manner, bringing benefit to all involved.
Emily Pickering, Specialist Commercial Services Lead, Patient Engagement in Clinical Development, NIHR Research Delivery Network Isabella Darbyshire, Specialist Commercial Services Manager, Patient Engagement in Clinical Development, NIHR Research Delivery Network
- Programs that help build trust and emotional connection with patients and caregivers by integrating the first person experience throughout all educational materials have, in our experience, the most impact, helping to increase understanding, reduce diagnostic delays, and empower patient communities.
- Case study presentation of successful patient-led education examples of highly trusted content across geographies, demonstrating engagement and sponsor value across therapy areas and brands.
Jasmine Malone, Group Director, Content & Storytelling, OPEN Health
Indeemo and Humanly will present how mobile ethnography captures authentic patient experiences to drive healthcare innovation, featuring their work with Asthma + Lung UK’s Innovation Accelerator programme.
- Mobile ethnography methodology and why it delivers unique insights
- 8-week study design capturing real-world usage patterns and context
- Co-analysis approach that democratises research for people with lived experience
- Tangible outcomes and practical implementation for patient-centric innovation
Eugene Murphy, Founder & CEO, Indeemo Jenni Parker, Founder & Director, Humanly
Afternoon Stream Sessions
ACCESS & COLLABORATION
Josie Godfrey, Co-Founder and CEO, Realise Advocacy
- Co-creating an innovative methodology
- Designing meaningful research tools
- Partnering for local impact
- Collaborative validation
- Co-creating the GENS publication
Claire Nolan, Head of Engagement, International Bureau for Epilepsy
- Why patient voice matters: shifting from researcher- centric to participant-driven research design.
- The challenge today: trials often start late, and participants struggle to find relevant opportunities— a reality our platform helps address.
- How The Patient Voice Database works: simple profile creation, matching to relevant opportunities, full control and consent for participants.
- Key benefits: for patients (access, control), and for researchers (better recruitment, representativeness, efficiency).
- Practical examples and early results: Belgium as pilot country; thousands registered; next steps for broader deployment.
Jean-Sébastien Gosuin, Founder, Curewiki
- This resolution is not just symbolic. It provides a concrete, evidence-backed roadmap for engaging patients, people with lived experience, healthcare providers, and civil society in a structured, measurable, accountable and resourced way in health system design, delivery and decision making. It is an opportunity to reshift focus on the health outcomes that matter –too often health is done to people, not with people. And it’s an opportunity for the patient community to claim its
space once and for all.
Amanda Bok, Chief Partnership Officer, The Synergist
- Common barriers to access
- Strategies to address barriers to access
Josie Godfrey, Co-Founder and CEO, Realise Advocacy
- To raise awareness of how digital literacy gaps fuel health inequalities across Europe.
- To show why pharma has a stake in closing this divide — for better patient outcomes, trust, and equitable access
- To share practical strategies and partnerships where pharma can lead, influence, and innovate responsibly.
Becky Warnes, Public Affairs and NHS Liaison
Manager, Orion Pharma UK Ltd
- Why patients need collaboration across all of healthcare
- How ISPEP delivers the ultimate impact for Patients
- Where to next: a global community of Change Champions
Emma Sutcliffe, Chief Patient Officer, ISPEP
- Mindset is key for treating illness.
- Communication between HCPs and patients is an essential tool to enhance this.
- Collaboration between all stakeholders is vital.
Steve Clark, Founder , Strive for Five
Josie Godfrey, Co-Founder and CEO, Realise Advocacy
CLINICAL RESEARCH & TECHNOLOGY
Robert Mitchell-Thain, CEO, PBC Foundation
- Reconsider terminology to reframe activity
- Prioritise engagement that leads to involvement and subsequent participation (listen-ask-invite)
- Shift thinking from ‘patient’ involvement to ‘potential participant’ involvement (PPIE becomes EIPP)
- Invest in ‘foresight’ as a valuable commodity
Lorna Allen, Senior Involvement Manager, Cystic Fibrosis Trust
- Analysis of the NIHR cancer trials portfolio and interviews with key opinion leaders found >18 age criteria, a major barrier in clinical trials, often lacked scientific justification.
- We established a multi-stakeholder group and young co-researchers (with lived cancer experience) to develop a toolkit supporting inclusion of 16 17- year-olds in ‘adult’ trials.
- We ran workshops with young people on trial inclusion, PPIE, research engagement, recruitment, and toolkit development.
- We are engaging commercial pharma partners to address barriers and embed TYA perspectives in research priorities, eligibility criteria, and engagement strategies.
- Our evidence informed the new national Cancer Plan, which now requires clinical justification for age limits in trials.
Tara Robinson, Research Manager, Cancer Clinical Trials Unit, UCLH Lauren Booker, CRP in TYA Research and Tissue Banking, UCLH
- Addressing logistical challenges crucial for better participation and retention
- Enhance reported outcome measures and quality- of-life assessments
Carl Lander, Director of Research, Pyruvate Kinase Deficiency International Alliance
- Building an approach to enable advocacy partnership throughout development
- The importance of listening and learning from each other
- Honest exchange brings success for everyone.
Greg Robertson, Sr Director, Patient Advocacy, Global Rare & Clinical Dev’t., Alnylam
- What it means for progress
- What it means for collaboration
- What it means for patients
- What it means for impact
Robert Mitchell-Thain, CEO, PBC Foundation
- Layering patient generated health data with clinical data
- Building insights across all diverse patient profiles
- Move beyond evidence for clinical trial participants only
Mark Bradley, CEO, PeopleWith
Robert Mitchell-Thain, CEO, PBC Foundation
6:00 pm - 7:00 pm - NETWORKING DRINK RECEPTION
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
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- Millennium Hotel and Conference Centre Gloucester London, 4-18 Harrington Gardens, London, SW7 4LH, United Kingdom
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- +44 (0) 2039 668 654