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Day 1


Patient empowerment and understanding to inspire and create a meaningful impact.

Holiday Inn London - Bloomsbury, an IHG Hotel, London, UK

Day 1 - Monday 26th February 2024

Emma Sutcliffe, Global Patient Officer, Ipsen Biopharma



  • 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?


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

Lara Bloom, President and CEO, The Ehlers-Danlos Society

Carole Scrafton, Director & Co-Founder, Flutters and Strutters

Bronwyn Lewis, Global Head of Patient Engagement, Boehringer Ingelheim International 

Roi Shternin, Founder & Chief Patients Officer, Chronically

Hayley Chapman, Sr Program Director, PFMD

  • Empowerment, experience, evidence – the impact of the patient voice
  • Engagement delivers value as a triple win – for patients, for pharma, for society
  • Ensuring voice to value in the ‘Patient 3.0’ era

Emma Sutcliffe, Global Patient Officer, Ipsen Biopharma

  • How to merge a company`s mission with the mission of the patient and caregiver community to improve outcomes, both for patients and the business?
  • How can a company operate in a patient-driven way to create meaningful value?
  • How do you establish the required change in mindset, relationships – and structures, company-wide?
  • How do you ensure patient engagement is socialised throughout the company?

Christel Paganoni-Bruijns, Independent Patient Engagement Consultant,  Former – Global Head Community Engagement 

  • Where are we today with integrating the patient voice into healthcare and HCP-patient/caregiver communication? Why is change needed?
  • Why the time is now to integrate patient-centricity into medical education for HCPs
  • How medical education for HCPs can evolve, including patient integration, to provide a holistic approach that supports advancing patient outcomes

Victoria Harvey-Jones, PhD, Associate Director of Clinical Strategy, Medscape Oncology Global

Steve Clark, Patient Advocate Campaigns Ambassador, Cancer Research UK, Volunteer Patient Voice, Strive for Five 10yr CRC survivor
Sarah Halford, Head of Medical Sciences, Centre for Drug Development, Cancer Research UK

  • Integration of Generative AI with online patient experience data to create patient journeys
  • Sustainable enhancement of patient-centricity and engagement
  • Challenges and ethical considerations

Janik Jaskolski, Chief Product Officer and Co-Founder, Semalytix

  • Importance of understanding different types of patients and what drivers and hinders their behaviour, before designing and optimising communications
  • Evolving from multichannel to omnichannel communication delivery to drive measurable engagement and behaviour change
  • Ensuring content resonates by: involving patients, uncovering and using their language not disease terminology, addressing appropriate EDI and health literacy levels, and meeting PiF TICK certification standards
  • PiF TICK case study on involving patients to improve user engagement

Linda Cowie, VP, Head of Behavioural Science & Patient Experience, SOLVE(D) Europe, An IPG Health Company

Sophie Randall, Director, Patient Information Forum (PIF)

  • The international perspective on what people with type 1 diabetes want from industry, according to international region
  • The Nobel Prize winning discovery of insulin in 1921 and how that legacy defines what people living with type 1 now want from industry
  • Type 1 diabetes patient priorities for the pharmaceutical industry and medical device industry
  • The rise of citizen science and how that changes the relationship that type 1 diabetes patient advocates want to be engaged with in industry research and development
  • A framework for patient engagement

Hilary Nathan, Policy, Communications & Community Engagement Director, JDRF

  • How pain points generate actions
  • Why it makes sense to work with patient advocacy groups
  • How to strive creating value to patients, their families and society
  • What tangible deliverables we can co-create with patient advocacy groups

Gabor Purman, Patient Advocacy Director, Kyowa Kirin International

  • Why there is a need for Patient involvement in publications framework
  • What is the framework?
  • How did we co-create the framework with cross-functional team and patients – the methodology
  • Ongoing implementation, feedback loops early applications and expected impact

Ana Marija Gjurovic, Global Head Patient Engagement, AstraZeneca

  • Publications are a critical element of the research communication pathway in the pharmaceutical and life science industry.
  • Plain language summaries and practicing good health literacy principles are important tools for embedding patient centricity and engagement in publications.
  • These tools enable diversity, equity, inclusion, and accessibility of publications and allow researchers to bridge the communication gap to serve patient communities and improve outcomes.

Adeline Rosenberg, Patient advocate & Doctoral Researcher, King’s College London

  • Sharing insights from our collaboration with Stanford University to educate patients on using AI tools in research co-production.
  • Reflecting on my co-authored work, “Precision Oncology: A Clinical and Patient Perspective”, and the role of AI in data-driven healthcare.
  • My role as a judge in the European Patient Digital Health Awards and the importance of patient-centric technology development.

Lydia Makaroff, Chief Executive, Fight Bladder Cancer

  • In 2022, we asked more than 40 Grünenthal cross-functional global leaders where we are and where we want to go with “Patient Engagement”
  • Based on this inventory we built and aligned our strategy for Patient Engagement with the following key actions:

1.Building a global network of cross-functional patient engagement colleagues
2.Bringing the patient voice into our organization
3.Building a global platform to share patient stories and initiatives within Grünenthal
4.Building a framework to measure and demonstrate the impact of patient engagement

  • All of the defined actions are implemented (measurement framework still ongoing) and will be explained to the audience with key learnings and key challenges

Dr Gudula Petersen, Global Patient Engagement Lead, Grünenthal

Neil Betteridge, Co-Chair, Chronic Pain Policy Coalition

  • The goal has been creating Brand authority , by innovating and excelling when it comes to provide solutions to our potential and current targets through face to face and digital initiatives along with strategic alliances with different key professional organizations.


  • Young adults often fall into a grey area between paediatric and adult cancer services
  • We found less is known about radiotherapy compared to other cancer treatments such as chemotherapy
  • We have used creative ways including working with artists and podcasts to enable young people to influence radiation research in London

Dr Lisa Whittaker, Public and Patient Engagement Coordinator, King’s College London

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