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, UK
Day 1 - Tuesday 25th February 2025
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
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- 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
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- 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
CareÂ
- 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
