Patient Empowerment World Congress 2025 Europe
“The importance of Patient Empowerment in pharma and healthcare in achieving improved health outcomes, building greater trust, and driving innovation within the industry"
Hilton London Kensington, London, United Kingdom
Day 1 - Thursday 25th September 2025
Anthony Cunliffe, National Lead Medical Adviser, Macmillan Cancer Support
KEY ASPECTS OF PATIENT EMPOWERMENT
- Challenges in achieving healthcare equity and how these barriers relate to the rise of consumer-driven healthcare models
- Identifying the necessary actions for hospitals and policymakers to ensure individuals can afford essential diagnostic tests and treatments without delaying care.
- How stakeholders in the healthcare system can cultivate an environment that empowers patients to better understand the cost and quality of the treatments they receive?
- How healthcare organizations are adapting to the increasing involvement of patients in their own healthcare and how this shift has influenced their strategies and product development.
Moderator:
Victoria Hayes, Director Public Affairs, Kyowa Kirin
Panelists:
Geoff Rollason, Formerly Patient Experience and Service Lead at Pfizer UK
Daniel Newman, Patient Advocate, Diabetes UK’s Science and Research Advisory Group
Emily Reuben OBE, CEO & Co-founder, Duchenne UK
Ankita Batla, Senior Vice President, Medical Strategy, Klick Health
- Standard definition
- Patient perspective
- Other suggestions and open discussions
Carole Scrafton, Director & Co-Founder, Flutters and Strutters
- Areas of focus for patient advocacy partnerships
- Best practice in working together to produce better outcomes for patients
- Benefits of working together
- Embracing a patient-centric mindset and keep the patient front of mind
- How to interact in every way with the groups that represent those patients
Wafae Iraqi, Patient Engagement Lead, EMEA, Johnson & Johnson
- 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, M H R A
- Enhancing provider schedules and empowering patients to book their appointments, thereby boosting accessibility and satisfaction.
- Applying technological solutions to improve the coordination of care.
- Optimizing processes to decrease inefficiencies, delays, and revenue shortfalls.
- Encouraging patient involvement through portals, applications, and educational materials.
RESERVED
- Introduction and historical context
- AI’s current applications in healthcare
- Legal and ethical considerations
- Challenges to AI integration
- Future trends in AI implementation within healthcare.
RESERVED
- How one parent led charity changed the paradigm for research, access and care in Duchenne Muscular Dystrophy
- Hercules – an award winning collaboration putting patient expertise at the heart of developing tools for HTA Duchenne UK created a global partnership with pharma and academics to give companies the best chance possible of successful HTA submissions
- DMD Hub – how the patient desire for clinical trials drove a £4million investment in clinical trial infrastructure in the UK
- DMD Care – how Duchenne UK created a national collaboration between patients and clinicians to improve SoC across the board.
Emily Reuben OBE, CEO & Co-founder, Duchenne UK
KEY ASPECTS OF PATIENT EMPOWERMENT
- Patient empowerment – a partner dance on a crowded dancefloor
- Mapping the steps – what does the evidence say?
- Stepping on toes – where the dance falters
- Choreographing next steps
Dr Liz Clark, Visiting Lecturer & Patient Engagement Theme Lead, King’s College London
- Elevate remission as a meaningful and achievable treatment goal
- Highlight civil society perspectives on the burden of inflammatory conditions and the need for remission- focused care
- Identify key policy and health system barriers to pursuing remission
- Develop patient advocacy strategies to address these barriers
Neil Betteridge, Patient Advocate, Sr Director, Europe,
GAfPA
- My experience in healthcare delivery
- The view from pharma
- How does it feel for patients?
Geoff Rolasson, Formerly Patient Experience and Service Lead at Pfizer UK
3:40 pm - AFTERNOON NETWORKING REFRESHMENTS
- Living with Osteogenesis Imperfecta and navigating life across two healthcare systems – Germany & the UK
- My experiences as a disabled student in mainstream education, and the importance of inclusive support
- The emotional and mental health impact of living with a rare condition, and confronting stigma head-on
- Speaking at the House of Lords, the Department for Work and Pensions, and the World Health Assembly
- Why patient voices—especially from disabled and rare disease communities must shape policies and systems
Niveda Kiridaran, Youth Advocate, Rare Diseases Int’l
Youth Leadership Programme
- Facilitating partnership working between patients and healthcare professionals
- Evolving our approach to meet the changing needs in the NHS
- Breaking down barriers to engagement – successes and learnings
- The challenge of reach vs need
- Maximising the impact for patients through supporting hospital staff
Catherine Wood, Head, Healthcare Prof. Support &
Engagement, Breast Cancer Now
CLINICAL RESEARCH & TECHNOLOGY
Anthony Cunliffe, National Lead Medical Adviser,
Macmillan Cancer Support
- What does patient centricity actually mean?
- How is it applied in the clinical and research worlds?
- What’s the difference between engaging with feedback from people in the research world compared to the clinical world?
- Are we doing enough?
Amelia Hursey, Strategic Director, parkinsonseurope.org
- How can technology truly empower authentic patient partnerships in clinical research?
- We will explore how to strategically deploy ever advancing technology where it directly addresses a specific patient or research challenge.
- We will also address the need to shift the ‘us versus
them’ mindset
Keith Berelowitz, Founder/CEO, pRxEngage Inc
Thomas Smith, Patient expert living with Cystic
Fibrosis, pRxEngage Inc
- Language accommodation in the conduction of cross- border clinical trials
- Children’s rights in the access to science
- Analysis of the state of the art: Europe as attractive ecosystem for cross-border access to clinical research
- Patient involvement in the design of cross-borders studies.
Begoña Nafría Escalera, Coordinator of eYPAGnet, Hospital
Sant Joan de Déu
3:40 pm - AFTERNOON NETWORKING REFRESHMENTS
- Best practices for training and supporting lived experience educators in healthcare.
- Empowering patients and families as co-educators and leaders—not just participants.
- Embedding authentic patient partnership into clinical education and peer support.
- Supporting patients through the emotional impact of storytelling and advocacy.
- Creating space for patient-led innovation to improve care and connection.
Monica Hulsey, Family as Faculty, Patient & Caregiver
Educator, Holland Bloorview Kids Rehabilitation
Hospital
- The value and power of foresight at the earliest possible stage of product development
- Identifying and maintaining relevance to the target patient population
- Supporting mechanisms for optimal efficacy and adherence
Lorna Allen, Senior Involvement Manager, Cystic Fibrosis
Trust
- Breaking down silos for comprehensive strategy to anticipate challenges and opportunities in both short and long term
- Addressing urgent policy changes and stakeholder concerns while planning for the future
- Integrating patient-centricity into the broader patient access strategy
- Harmonisation imperative for sustained growth
Moderator:
Panellist:
Glenn Darley, Patients Engagement Lead EMEA, Recordati Rare Diseases
Beverly Lui, former Head, Patient Advocacy and Engagement International Region, Apellis
Lopa Ghosh, Sr Advisor, Policy & Communications, Global Health Advocacy Incubator
6:15 - 7:15 pm - NETWORKING DRINK RECEPTION
