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Patient-Centric Initiatives Across The End-To-End Value Chain

Copthorne Tara Hotel London Kensington, London, United Kingdom

Thursday 1st - Friday 2nd June 2023

Paradigm Global Events is very pleased to welcome you to our upcoming Patient Centricity and Collaboration World Congress 2023 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 “Patient-centric initiatives across the end-to-end value chain“.

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


  • What can the industry do to truly integrate patient voice in all aspects of drug development?
  • What can be down to breakdown barriers and imbed Patient-centricity?
  • How can pharma and patient advocates effectively work together?
  • How to ensure that a wider number of voices are heard.
  • New toolsets that are making it possible to include more objective scales and measurement criteria in discussions about what and where to change

Peter Buttle, Patient Advocate, Independent Cancer Patients’ Voice

  • Life prior to diagnosis
  • What took me to my GP
  • Delays in getting treatment at the outset
  • Results & Diagnosis
  • The Early Years
  • Present Day

Alfred Samuels, Patient Advocate, Author, Ambassador/ Member, Cancer Research UK

  • Recognising the gaps in our approach
  • Shifting the patient voice from passive to active
  • Moving toward co-creation, aiming for co-production
  • Bringing patients into the heart of the business

Geoff Rollason, Patient Experience & Service Director Oncology, Pfizer UK

The potential of precision medicine, in particular its power to transform the lives of patients currently living
with Systemic Mastocytosis and other rare diseases will be discussed

Georg Pirmin Meyer, Senior Vice President, Head of International, Blueprint Medicines


Soren Skovlund, Senior Director & Head of Patient Engagement, Patient-Centered Research, Evidera

Ashley Duenas, Senior Research Associate, Patient-Centered Research (PCR) group, Evidera


  • Introduction to patient centric technologies
  • The advantages of decentralized clinical trials and impact on drug development
  • Case studies on use of low volume technologies
  • Implementation challenges and potential solutions

Sally Fischer, Sr. Director & Sr. Fellow, BioAnalytical Sciences/ADT, Development Sciences, Genentech

  • Why is public/patient’s engagement a challenge for basic scientist?
  • Training: Hands on experience
  • Proposed guidelines

Valentina Biasin, Postdoctoral Researcher, Dep’t. of Physiology, Medical University of Graz

  • Clinical research is improved by patients being partners with clinicians and healthcare professionals, rather than passive recipients of healthcare.
  • Involve patients in clinical research, clinical trials, clinical/academic units , tissue banks
  • Putting the patient perspective and helping to improve clinical research.
  • Leads to better recruitment to clinical trials and faster improvements in treatments and outcomes for all cancer patients.
  • Empower patients to speak as equals with the professionals as patient advocates through education

Angela King, Independent Patient Advocate, Independent Cancer Patients’ Voice


  • Why and how should we reward and recognise the contribution of our patient and public partners?
  • The risks and benefits of offering payment/incentives for patient and public involvement.
  • Involvement at Prostate Cancer UK: our reward and recognition journey.

Steven Towndrow, Patient and Community Involvement Manager, Prostate Cancer UK

  • What does it mean to Co Create and Co Deliver
  • Why is it Vital across the NHS, Health and Social
  • How this is achieved

Julie Jaye Charles, Board Advisor & Lead on Advocacy & Co Production, NELFT NHS Foundation Trust

  • Current system and the gaps and challenges that exist in patient engagement and the generation and use of PED
  • Co-creation of the PFMD “Global PED Navigator” and the benefits it provides to all stakeholders.
  • The need for a roadmap to navigate the complex landscape of patient engagement and PED
  • Why Patient Engagement and PED integration is the future of healthcare

Carole Scrafton, CEO & Co-Founder, FibroFlutters

Hayley Chapman, Senior Program Director, The Synergist

Soren Skovlund, PhD, is the Senior Director and Head of Patient Engagement of Patient-Centered Research at Evidera.


  • 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


Soren Skovlund, Senior Director & Head of Patient Engagement, Patient-Centered Research, Evidera

Chelsea Moran, Associate Director, Patient Partnerships, Patient Centricity, Astellas
Josie Godfrey, Co-Founder and CEO, Realise Advocacy
Carole Scrafton, CEO & Co-Founder, FibroFlutters
Valentina Biasin, Postdoctoral Researcher, Dep’t. of Physiology, Medical University of Graz

  • Four main silos identified – How legacy structures and processes block the effective deployment of patient-centred strategies
  • The power of a collaborative approach for integrating the patient perspective into R&D, from an industry and agency perspective
  • How to design a seamless patient engagement and insight generation program and marry up ‘the best of both worlds’
  • A case study that exemplifies a PFDD-compatible ‘360’ approach to learn from and partner with patients from the start of drug development

Marco Koch, Director, Early Patient Voice Lead, UCB Biopharma
Susan Daniels, VP, Patient Engagement, Lumanity
Gareth Nichol, Group Business Director, Lumanity Insight

  • The impact rare disease patient organisations can have on access decisions
  • Challenging conventional approaches to patient engagement in access
  • Planning for success

Josie Godfrey, Co-Founder and CEO, Realise Advocacy


  • Should it be necessary to demonstrate value?
  • Getting out of the echo chamber
  • Untapped opportunities – hidden in plain sight?

Dr Liz Clarke, Patient Engagement Team Lead, Kings College London

  • Vision and reality
  • Organizational drivers and enablers
  • Setting PE up for success
  • Progress and opportunities

Michaela Dinboeck, Head of PE GPSC IM Lifecycle, Novartis

  • How to get meaningful insight on your protocol
  • Resources to help you reach under-served populations
  • PRES – the Patient Research Experience Survey
  • Case study examples of working with patients as peers.

Dr Karen Matthews, Business Development Manager, NIHR Clinical Research Network

  • Presentation of ELPA
  • The role of patients’ organisations
  • Patient centricity
  • Example of patients’ advocacy activities

Ivana Dragojević, VP & Leader of the Working Group, European Liver Patients’ Association

  • Stakeholders unlocking innovations at a remarkable new speed
  • Innovative approaches for direct-to-patient assume significant importance for driving patient-centricity
  • Addressing challenges faced by individuals when accessing healthcare within both developing and developed nations
  • The importance of personalised patient care
  • Increasing adoption and shifting to remote and digital care
  • Data sharing to enhance patient experience and outcomes in real-time.

Soren Skovlund, Senior Director & Head of Patient Engagement, Patient-Centered Research, Evidera

Carole Scrafton, CEO & Co-Founder, FibroFlutters
Peter Buttle, Patient Advocate, Independent Cancer Patients’ Voice

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