Conference Agenda

Patient Centricity & Collaboration - Day 1

Day 1: Monday 8th November 2021

Richard Jones, Patient Engagement Managing Director, Open Health Group  

  • The value of engaging and communicating with the patient in every part of the clinical research process
  • Examing 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?


Carole Scrafton, CEO & Co-Founder, FibroFlutters

  • Bringing the organization along
  • The role of the Organizational model
  • Enablers to make PE a reality

Michaela Dinboeck, Global Head Patient Engagement Center of Excellence, Novartis Pharma AG

  • Impact of these new innovations on patients and caregivers
  • What difference do these recent innovations have made to their lives
  • What must be done to accelerate innovations and broaden access at the same time
  • What challenges still remain to increased equity for patients and their families?


Dr. Sumira Riaz, Lead Health Psychologist, Open Health Group

  • Gain insights on how they view a successful patient-centred collaboration
  • Understanding what the patient is looking for and what is important
  • Discuss opportunities for enhanced collaboration in the future
  • Valuable feedback and strategies on how to improve collaboration that makes a real-world difference. 


Nicholas Brooke, Founder & Executive Director, The Synergist



Lara Bloom, President and CEO, The Ehlers Danlos Society

  • Can digital tools and technologies drive a significant increase in patient satisfaction?
  • Improving patient engagement and outcomes through technology
  • What are the benefits of the digital health ecosystem to patients carers and the healthcare systems.

Richard Jones, Patient Engagement Managing Director, Open Health Group

  • 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 toaccess in real life?




  • Over the last decade, Regulators have steadily
    sought patient contribution to their work. This has
    resulted in increasing requirements from pharma to
    incorporate the patient voice into the planning of
    clinical research programmes. This talk will consider
    these evolving expectations and the ways s in which
    pharma can best prepare to meet them.

Liz Clark, former Vice President, Medical Affairs, Norgine

  • Finding common ground between stakeholders as the foundation to projects across the value chain
  • How can the foundational elements of patient-centred care be embedded
  • Expectation vs delivery: The importance of goal setting and measurement

Pascale Cavillon, Global Patient Centricity Director, Ipsen

  • Why evaluate partnerships?
  • Evaluation steps
  • What to evaluate? Possible metrics
  • What methods can be used?
  • Putting it into practice

Lidewij (Eva) Vat, Researcher and Lecturer Meaningful and Sustainable Patient Engagement, Athena Institute


  • Collecting, utilising results and collaborating with stakeholders to improve patient experience 

Dr. Sumira Riaz, Lead Health Psychologist


Richard Jones, Patient Engagement, Managing Director

  • Children and young people have the right to be involved in
    health and in science in any decision that matters to them.
    A capacity-building programme at the European level has
    been designed with the aim to empower them and provide
    them with the necessary knowledge and skills.

Begoña Nafría Escalera, Patient Engagement Coordinator,
Hospital Sant Joan de Déu

  • Why a multi-stakeholder approach and why did I get involved.
  • The multi-stakeholder network model of PFMD and how it worked.
  • The positives and negatives of my experience
  • Summing up – the importance of using such a model (to help increase patient engagement).

Carole Scrafton, CEO & Co-Founder, FibroFlutters

  • Making the clinical trial process more easier
  • How to relate to patients
  • Making them feel more valued

David Ross, Patient Advocate, Rare Disease Mental Health

  • Understanding the patient need to deliver appropriate support
  • Adapting and accommodating new changes that affect the patient
  • Latest innovations that benefit the patients

Lara Bloom, President and CEO, The Ehlers Danlos Society

  • What patients worry about regarding DCT
  • What motivates patients to participate in a DCT
  • How to involve patients in the development of a
    decentralised trial protocol
  • How to succeed with enrolment
  • How to ensure retention in DCT

Henrik Vincentz, Director and Founder, James Lind Care

  • What do we mean by virtual patient and public
    involvement in clinical trials
  • Key opportunities and challenges when working virtually
  • Top tips for effective virtual patient and public
  • The future: the value of continuing working virtually

Dr Markella Boudioni, Patient & Public Involvement &
Engagement Lead, The Royal Marsden NHS Foundation Trust

  • Discussing current virtual trial design
  • How these design changes have been developed and
    improve patient’s experience
  • The potential benefits to clinician using the virtual
    trial design

Cho Ee Ng, Research Fellow, NIHR PRC Newcastle

18:00 - Networking Drinks Reception

Sponsors & Exhibitors

Scroll to Top