8th PATIENT CENTRICITY & COLLABORATION WORLD CONGRESS 2026 EUROPE
Amplifying Patients Voice in Research, Drug Development and Healthcare
Copthorne Tara Hotel London Kensington, London, United Kingdom
Day 2 - Wednesday 26th February 2026
Co-Chair:
Gunnar Schroefel, Senior Director Global Patient Advocacy, Daiichi Sankyo
Co-Chair:
Robert Mitchell-Thain, Chief Executive Officer, PBC Foundation
CHALLENGES & POTENTIALS OF PATIENT ENGAGEMENT
- Why diversity and inclusion in clinical trials are crucial?
- Understanding critical barriers to minority and underserved patient communities participation in clinical trials
- Equity and Inclusion of Rare Disease Patients – A Must on Many Levels
- What can the industry do to promote more diversity in the future?
- Latest guidelines that make healthcare more inclusive
Moderator:
Gunnar Schroefel, Senior Director Global Patient Advocacy, Daiichi Sankyo
Panelists:
Ify Osunkwo, Chief Patient Officer, Novo Nordisk Rare Disease
Naomi Litchfield, Director, Patient Advocacy, Bionical Emas
Dr Sondra Butterworth CEO & Founder, RareQoL and EDIRA
Amy Yarker, Senior Business Development Manager, NIHR Research
Nikul Bakshi, Research Involvement Lead, Parkinson’s UK
- Why drive internal culture of patient centricity
- Creating a fertile internal environment
- Identifying internal champions
- What next? How NN rare D has operationalized patient centricity internally
Ify Osunkwo, Chief Patient Officer, Novo Nordisk Rare Disease
- What does patient centricity mean for the pharmaceutical and life science industry?
- Why does the industry need to be a part of the patient-centric movement?
- Patient-centric initiatives that have a tremendous impact – case study
- Successful strategies and best practices to successfully manage patient-centricity in with description of frameworks to operationalize patient centric work
- How to maintain mutually beneficial ongoing partnerships between the patients and industry?
Wendy Erler, VP, Global Head Patient Experience, Advocacy and Insights, AstraZeneca
The implementation of patient engagement is by no means uniform, varying massively between different contexts and organisations. This talk will:
- Reveal some intriguing mechanisms driving human behaviour
- Challenge the efficacy of a ‘fuel-based’ mindset
- Uncover the impact of frictions in impeding progress
- Show how the COM-B model can be utilised to diagnose difficulties and design targeted interventions to overcome them
Dr Liz Clark, Visiting Lecturer & Patient Engagement Theme Lead, King’s College London
- Discuss current challenges blocking effective Patient Engagement
- Putting the patient first achieves the best experience and outcome for that person and their family
- Digital patient engagement tools and personalized care models to enhance healthcare experiences and outcomes.
Lara Bloom, President and CEO, The Ehlers-Danlos Society
- X-linked hypophosphatemia (XLH) is one of appr. 8,000 rare diseases, it affects those living with XLH and their families in multiple ways
- Access to adequate care for people living with rare diseases is very often more limited than for other patient communities
- The support program “XLHCare” aims to support children, adolescents and adults with XLH in terms of therapy application and adherence
- More than five years of practical experience with XLH Care have proven the multi-faceted benefits of the program
Dr. Holger Storcks, Public Affairs and Patient Advocacy Director DACH, Kyowa Kirin GmbH
Christiane Sonntag, Patient Services Manager, Kyowa Kirin GmbH
- The Octopus approach: delivering coordinated, informed patient-centric decisions across the business.
- Understanding which parts of the organisation collaborate with Patient Advocacy Groups & how information flows between them.
- Benchmarking organisational patient-centricity: using patient advocacy maturity models to show where, and how, to achieve best practice.
- Everyone is part of patient success: the role of leadership & internal comms in galvanising patient-centric thinking
Mark Hanson, Co-Founder, Delta Consulting
Bianca Swalem, Co-Founder, Delta Consulting
- Experienced patient advocates are invaluable on steering groups and strategic advisory boards, often bringing a wealth of personal and community experience and knowledge. But can they really remember what it is like to be sat in a clinic, with a new diagnosis, and be handed a study information sheet immediately after having been told about standard of care treatment for the first time?
- When companies rely on input from patients who are highly knowledgeable and experienced in research, their protocols and participant-facing materials are likely missing out on receiving feedback from the very people they most want to reach once sites open to recruitment.
- Hearing from research unaware and/or hesitant patients is as valuable as working alongside patient advocates and experts, to ensure that viewpoints and feedback from the widest possible patient population is incorporated into study design, monitoring and delivery.
- In this session you we will share how to find and build trusting relationships with people who do not necessarily put themselves forwards for research engagement activities, and where and how they can add the most value in study development.
Emily Pickering, Patient Engagement in Clinical Development Service Lead, NIHR Research
- The session will share with delegates how the ABPI developed a PPI strategy
- The learning and insight gathered from the first 3 years
- The results and impact
- The next phase of PPI
Amit Aggarwal, Executive Director Medical Affairs & Strategic Partnerships, ABPI
- Challenges in implementing principles of good practice
- Pragmatic approaches to inclusivity and representation
Josie Godfrey, Co-Founder and CEO, Realise Advocacy
Lindsay Birrell, Co-CEO, Realise Advocacy
- What are the challenges and opportunities PAG boards encounter with Pharma?
- Has the engagement landscape worsened or improved in recent years?
- What solutions are they working towards?
- What do they cite as best practice?
Nigel Nicholls, General Manager UK/Nordics & Baltics, Egetis Therapeutics AB
- Highlight the Impact of Patient Engagement
- Analyze Key Trends in the PE-Sustainability Landscape
- Showcase Roche’s Leadership in integrating Patient Engagement in Sustainability Strategies
Samantha Knott, Global Patient Partnership Leader, Roche
Hayley Chapman, Senior Program Director, PFMD
- Recognising key areas to ensure patients’ experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into drug development and evaluation.
- Patient’s input to improve quality, relevance, safety and efficacy of drug development
- Challenges and opportunities for patient-centric product design
- The role of respective stakeholders and the way they interact, from the early steps of drug development to access in real life?
Moderator:
Dawn Lobban, Co-founder & Managing Partner, Amica Scientific.
Panelist:
Barbara Valastro, Ph.D. Head of R&D Patient Science, AstraZeneca
Dr Andreas L.G. Reimann, Managing Partner, Co-founder, admedicum GmbH & Co KG
Nikul Bakshi, Research Involvement Lead, Parkinson’s UK
Dr Oleksandr Gorbenko, Global Patient Affairs Director, Ipsen
- Understanding the drivers for innovation in pharma
- Partnering with patients and placing patient well-being at the core of all initiatives
- Real-world data and patient-reported outcomes presents the power and the potential to redesign healthcare
- Innovative approaches for direct-to-patient assume significant importance for driving patient-centricity
- Technologies that enhance the patient-centricity in pharma
Moderator:
Ines Teixeira Gonçalves, Head of Patient Engagement and Advocacy, Therakos
Panellist:
Glenn Darley, Patient Engagement Lead, EMEA, Recordati Rare Disease
Kayuri Odedra, Associate Director, Patient Advocacy UK & Ireland, Alexion
Lisbeth Sneed, President, PICC United
Co-Chair:
Gunnar Schroefel, Senior Director Global Patient Advocacy, Daiichi Sankyo
Co-Chair:
Robert Mitchell-Thain, Chief Executive Officer, PBC Foundation
