8th PATIENT CENTRICITY & COLLABORATION WORLD CONGRESS 2026 EUROPE
Amplifying Patients Voice in Research, Drug Development and Healthcare
Copthorne Tara Hotel London Kensington, London, UK
Day 1 - Tuesday 25th February 2026
Emma Sutcliffe, Founder, International Society of Patient Engagement Professionals (ISPEP)
TRENDS & STRATEGIES IN INTEGRATING PATIENT VOICE
- The value of engaging and communicating with the patient in every part of the clinical research process
- Examining the right approach for patient and industry to positively impact healthcare costs and patient outcomes through patient engagement
- How can patient expertise create significant value to the industry?
- What are the best practices and strategies to guarantee that patient centricity is at the forefront of pharma?
Moderator:
Emma Sutcliffe, Founder, International Society of Patient Engagement Professionals (ISPEP)
Panelists:
Rebecca Lisle, Head of Patient Advocacy, EU and International, Jazz Pharmaceuticals
Heidi Müller, Head of Patient Advocacy, Galapagos
Steve Clark, Founder and Patient Advocate, Strive for Five
Diana Heimberg, Patient Expert, The Bloc
- The era of evidence-based engagement leads to a new type of patient science
- Patient Engagement is a highly developed skill set and an established discipline
- ISPEP comprises patient engagement professionals of the highest integrity
- At ISPEP, members are ‘all in’ and committed to change leadership
Emma Sutcliffe, Founder, International Society of Patient Engagement Professionals (ISPEP)
- A Bandana and a Bluebird – the critical role of caring for people in healthcare
- How to effectively partner for patient-focused medicines design, development and delivery [internally and externally]
- Operational elements required to implement Patient Centricity successfully in organizations
- Cultural elements required to implement Patient Centricity successfully in organizations
Dr. Anthony Yanni, Senior Vice President and Global Head of Patient Centricity, Astellas Pharma
- Systematic PE and Advocacy is in evolution
- Stakeholders in the HC system are accelerating efforts to involve patients
- Similarly Industry is looking for acceleration of PE
- Case study of NVS on the evolution
Focused approach on PE and Advocacy in a new model - Key areas of PE in Deve to drive impact
- Early successes (examples from a few disease areas)
Michaela Dinboeck, Head Patient Engagement, Novartis Pharma
- How to improve preclinical and clinical research through patient integration
- The importance of patient integration in healthcare to advance outcomes
- Why the time is now to incorporate patient integration into medical education for HCPs
Victoria Harvey-Jones, Clinical Strategist (Oncology) & Worldwide Patient Integration Lead, Medscape Education Global
Rachel Grimley, Senior Vice President of Drug Discovery, Cancer Research Horizons
Kevin Fernando, General Practitioner – Partner, North Berwick Health Centre
- Learn about the latest technologies that can improve the efficiency and effectiveness of clinical trial design, addressing issues like increasing complexity
- Discover the principles and best practices for clinical trial design that can increase the likelihood of success, through a combination of literature analysis and practical experience
- Examine the challenges faced by patients during clinical trials and learn about potential solutions that can reduce the burden and increase the benefits for patients
- The value of patient collaboration
- Best practice for engaging patients
- Case Study: Patient Integrated Design in Action
Mark Doyle, Founder, A Life in a Day
A short exercise, exploring how even the most technical science can fire up public imagination.
- Finding the heroes
- Mapping the quest
- Telling the story
- Inspiring action
Tim Gomersall, Managing Director, GIG Health
Afternoon Stream Sessions
ACCESS & COLLABORATIONS
- Industry often has many deep relationships across TAs and expertise within the advocacy community and with various experts on topics within patient centricity
- Bringing these groups together along with subject matter experts on topics critical and relevant to the community is very valuable in helping to initiate partnerships and sharing of best practices that can benefit the community and elevate patient centricity
- The utilization of workshops and having defined outputs as a part of the convening helps the community take the learnings into their everyday advocacy work
Janelle A. Goins, Sr. Director, Global Community
Engagement & Advocacy, Gilead Sciences, Inc
- Case studies showcasing successful partnerships between healthcare providers, pharmaceutical companies, and patient advocacy groups.
- Strategies for empowering communities through education, training and support networks to increase active participation in decision making
- Innovative approaches that facilitate patient engagement and enhance collaboration among stakeholders.
Dr. Andreas L.G. Reimann, Co-Founder & Managing Partner, admedicum GmbH & Co KG and
Partners4Patients Foundation
- Have patient “Advisors” on a panel for clinical trials.
- Have a patient advocate/liaison collaborating.
- Patient Surveys
Dakar De La Cruz, Director, Global Patient Insights & Solutions, Alexion Pharmaceuticals
- Emphasize the need for patient voices in drug development and healthcare delivery.
- Explore the Role of Patient Experience Data (PED)
and discuss how effective Patient Engagement (PE) informs PED and aligns healthcare decisions with patient needs. - Introduce key tools for Patient-Centric Initiatives
- Share strategies and provide practical approaches for integrating patient engagement into the generation and use of PED
- Foster Collaborative Partnerships
- Offer takeaways that attendees can implement to enhance patient engagement in their organizations.
Hayley Chapman, Senior Program Director, PFMD
- Diagnosis and Uncertainty: Who Else Feels Like Me?
- The Power of Online Communities
- Communities, Pharma Companies, and Patient Associations: A Shared Mission
- IN.PAZIENTI Bridges the Gap
Gaia Presotto, Project Manager, Trainer Patient
Expert
Diana Heimberg, Patient Expert, The Bloc
Carole Scrafton, Director & Co-Founder, Flutters and
Strutters
- Disparities in pain research and care persist with respect to gender and sex but also regarding racial, ethnic, and socioeconomic groups.
- The pharmaceutical industry can play a critical role to addressing the needs of diverse patient populations in research and providing medicines and services for all individuals.
- Grünenthal is aiming to improve equity in pain research and care to ensure that all people have access to effective treatments thereby improving health outcomes for everyone.
- We will evaluate and discuss how all stakeholders can work together to achieve this goal.
Gudula Petersen, Global Patient Engagement Lead, Grunenthal
Neil Betteridge, Senior Director, Europe, Global Alliance For Patient Access
RESEARCH & DEVELOPMENT
- What we know
- What we should know
- What we should do ?
Pascal Derrien, Chief Executive Officer, Migraine
Ireland
- Receiving a life changing diagnosis
- How DHDDS mutations affect individuals
- Creating a research community
- Overcoming barriers
- Our plans and hopes from the future
Melanie Dixon, Trustee, Cure DHDDS
- Psychology frameworks to uncover attributes and variations in patient behaviour
- Key barriers and enablers patient behaviour within trial engagement using psychological analysis
- Recommendation for enhancing engagement in trials using behaviour change methods
Dr Sumira Riaz, Chartered Health Psychologist and
Patient Engagement Consultant, Unboxed
Psychology
- Patients and caregivers know best when it means improving the quality of life.
- Reality is much different than theory.
- Benefits of real-world experience inserted in basic science equals endpoints and outcomes that can be overlooked as unimportant.
- Why clinical trials are struggling with patient recruitment, diversity in the trial participant population and retention of the clinical trial participants and how all of these problems are linked to the overall system which clinical trials are formed around.
- Possible solutions on how to fix these problems and move forward to improve clinical trials and drug development all together.
Rasmus Hjorth, Head of Communication, James Lind
Care
- Across the spectrum of disease, from common to rare, patient data is becoming a critical driver of drug discovery, development, diagnosis, commercialization and inclusive and equitable access to trials and treatments.
Robert Mitchell-Thain, Chief Executive Officer, PBC
Foundation
- To Follow
Bob Stevens, Group CEO, MPS.SOCIETY
6:15 - 7:15 pm - NETWORKING DRINK RECEPTION
