7th PATIENT CENTRICITY & COLLABORATION WORLD CONGRESS 2025 EUROPE
Amplifying Patients Voice in Research, Drug Development and Healthcare
Holiday Inn London - Bloomsbury, an IHG Hotel, London, United Kingdom
Tuesday 25th - Wednesday 27th February 2025
Facilitate Live is very pleased to welcome you to our upcoming Patient Centricity and Collaboration World Congress 2025 Europe.
The two-day Congress aims to build meaningful collaborations within the industry, advocacy groups, clinicians, researchers, and most importantly, patients and their caregivers. Gain practical strategies and best practices on challenges, innovations, technologies, and concepts in achieving this goal.
The congress focuses on “Amplifying Patients Voice in Research, Drug Development and Healthcare“.
Patient-centricity is a vital aspect in the research and development of biopharmaceutical products, disease management, designing a treatment, clinical trial, or other health solutions. In order to create a patient-centric solution, one must truly embrace a collaborative endeavor with the patient and their caregivers. Establishing a patient-centric solution involves getting feedback from real patients and their loved ones, and making decisions based on their medical conditions, experiences, needs, perspectives, and priorities.
In the current climate where the patients are increasingly becoming more empowered, Lifesciences and Pharmaceutical companies should confront the status quo and welcome the opportunities to embrace a wide range of patient-centered perspectives presented by an emerging ecosystem. While the technology-driven world poses challenges, it also holds opportunities to build a positive patient experience by coordinating the health ecosystem to center on the patient. Reevaluating how it develops and delivers drugs to improve experiences and outcomes and also to continuously adapt and transform to meet the evolving needs of patients.
The industry has come a long way with utilizing a patient-centered approach. The concept has gone from a buzzword to a potential trend, to a perceivable goal.
Whilst the industry has advanced in recent years, the evolving healthcare model and ecosystem brought forward by advances in technology and more involved, empowered patients, means true patient centricity is a continuing quest and a compelling commitment.
We look forward to meeting you at the Congress!
Sincerely yours,
Jocelyn Raguindin
Conference Director
Paradigm Global Events / Facilitate Live
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:
- 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)
- Bullet points to follow
Dr. Holger Storcks, Public Affairs and Patient Advocacy Director DACH, Kyowa Kirin GmbH
Christiane Sonntag, Patient Services Manager, Kyowa Kirin GmbH
- 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 Global Product Strategy, Novartis Pharma
- Sharing insights into a live real-world example of this type of partnership
- Explaining the roles and responsibilities in achieving a positive outcome
- Providing key learning to the evolving process
- Supplying the audience with guiding principles for future partnerships
- 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
- Understand where patient centricity can advance the interests shared by industry and the patient community
- Consider how focused goals and programs can strengthen research and development, commercialization and access
- Focus on opportunities to integrate patients, caregivers, consumers and advocates’ key concerns and insights into company plans and decision making
- Discuss applications of this targeted approach to your patient centricity goals and programs
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
- Learning: Balancing health system priorities and
resources to address patient community needs. - Creating policy to end disparities and open access to
new regenerative and translational therapies. - Increasing funding and technical support to CBOs for
community outreach and education efforts.
- 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: Present the PE & PED Integrated Navigator and the Patient Experience Dossier (PED) template for streamlining the generation and use of patient insights.
- Share strategies and provide practical approaches for integrating patient engagement into the generation and use of PED
- Foster Collaborative Partnerships: Highlight successful collaborations among patients, researchers, and industry to strengthen use of PED
- Offer takeaways that attendees can implement to enhance patient engagement in their organizations.
Hayley Chapman, Sr Program Director, PFMD
- 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
- Education of the process of clinical trials
- Listen to the Patient needs and help them to understand what the focus of the trial is.
- Understanding Pharmaceutical costs of trials
Carole Scrafton, Director & Co-Founder, Flutters and
Strutters
- How we might innovate our way out of increasing erosion of trust between patients and “the system”, by learning from CPG use cases, nonprofit communications, digital health solutions, shifting trends in consumer media consumption, shared accountability, and increased federal protections.
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
- 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.
- To Follow
Bob Stevens, Group CEO, MPS.SOCIETY
- 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
- Integration of the patient perspective into the development process
- Challenges and strategies for improving study protocols
- Streamline your clinical trial process to drive enrollment
Carole Scrafton, Director & Co-Founder, Flutters and
Strutters
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:
Panelists:
Ify Osunkwo, Chief Patient Officer, Novo Nordisk Rare Disease
Ify Osunkwo, Chief Patient Officer, Novo Nordisk Rare Disease
- Consider the patient’s perspective and lived experience when planning treatment pathways.
- Use digital technologies and provide digital, remote, and home-based treatment options.
- Address issues like pricing, supply and distribution, market accessibility, and regulatory frameworks.
- Increase collaboration and alignment between EU Member States to simplify evidence generation.
Amit Aggarwal, Executive Director Medical Affairs & Strategic Partnerships, ABPI
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
- The importance of data democratization
- Common challenges in clinical data review that hinders clinical trials
- Strategies in overcoming these challenges
- How to seamlessly integrate data from a variety of sources?
- How to improve safety review efficiencies and reduce the timeline to critical studies?
- Understanding complexities and addressing challenges faced by the industry in setting up end-to end supply chain for cell and gene therapies
- Best practices and lessons learned that guarantees effective manufacturing and delivery of CGTs to the patients who needs them the most
- Robust technologies and innovative platforms that connects therapies with patients both in clinical and commercial scale
Senior Representative, NIHR (National Institute for Health and Care Research)
- Review of England’s rare disease action plan
- Lessons Learned
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: Emphasize how integrating patient engagement (PE) can significantly enhance and accelerate ESG and sustainability commitments within the life sciences sector.
- Analyze Key Trends in the PE-Sustainability Landscape: Present insights from PFMD’s recent analysis of life science companies, showcasing emerging trends in the integration of PE into ESG and sustainability strategies.
- Showcase Roche’s Leadership in integrating Patient Engagement in Sustainability Strategies: Illustrate Roche as a leading example by detailing its innovative incorporation of patient engagement under stakeholder engagement in the social section of its materiality report, demonstrating a commitment to prioritizing patient perspectives.
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.
Panelists:
- 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
