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Day 2


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

Copthorne Tara Hotel London Kensington, London, United Kingdom

Day 2 - Friday 2nd June 2023

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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