5th PATIENT CENTRICITY & COLLABORATION WORLD CONGRESS 2024 EUROPE
Patient empowerment and understanding to inspire and create a meaningful impact.
Holiday Inn London - Bloomsbury, an IHG Hotel, London, United Kingdom
Monday 26th - Tuesday 27th February 2024
Facilitate Live is very pleased to welcome you to our upcoming Patient Centricity and Collaboration World Congress 2024 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 / Facilitate Live
Emma Sutcliffe, Global Patient Officer, Ipsen Biopharma
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:
Dr Liz Clarke, Patient Engagement Team Lead, Kings College London
Panelists:
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
Robert Mitchell-Thain, CEO, PBC Foundation
CHALLENGES & POTENTIALS OF PATIENT ENGAGEMENT
- How companies can advance health equity through people- and patient-centered frameworks.
- Specific domains of action for addressing health equity through people and patient engagement;
- Success measures of efforts to advance health equity
- What can the industry do to promote health equity in the future?
Moderator:
Panelists: Christel Paganoni-Bruijns, former Global Head Community Engagement, Swedish Orphan Biovitrum AB
Neil Betteridge, Co-Chair, Chronic Pain Policy Coalition
- The AstraZeneca Global Patient Engagement Team has worked across the development lifecycle to embed patient-driven solutions resolving common development challenges. We will discuss how we uplifted the capabilities of our evidence teams to engage patients across the development continuum and will present examples showing what we do to impact study planning, recruitment and conduct, leading to tangible results for better patient outcomes.
Marie Eckerd, Global Patient Engagement Director R&I, BioPharmaceuticals Medical, AstraZeneca
- Limited research into the impact of patient involvement in HTA
- The work is a huge undertaking for PAGS especially smaller ones
- The impact of involvement on the organisation and individual
- Solutions and sustainable future for PAG involvement
Lindsay Birrell, Co- CEO, Realise Advocacy, Chair of trustees, Medics 4 Rare Diseases
Josie Godfrey, Director, JG Zebra Consulting, Co-Founder and CEO, Realise Advocacy
- The development of qualitative research in healthcare settings
- What does good look like?
- Examples of practical and imaginative qualitative methodologies
- The benefits of scientific rigour to develop insight into patient and carer experience.
Dr Liz Clarke, Patient Engagement Team Lead, Kings College London
- This presentation aims to provide a comprehensive overview of the transformative power of data in optimizing patient engagement strategies, leveraging KPIs and metrics, and utilizing patient experience data to inform decisions by the patient community, industry, health care professionals, regulatory/HTA agencies, and the investment community for better health outcomes.
Hayley Chapman, Sr Program Director, PFMD
- The Patient Partnership Index: what it is and why it began
- Examples of best practice from the Index to inspire your own patient engagement programmes
- Why companies and patient organisations should enter the Index
Jenny Ousbey, CEO & Founder, OVID Health
- The journey to empowerment
- Walking the talk of Patient Centricity
- The potential of non-competitive collaboration
Bronwyn Lewis, Global Head of Patient Engagement, Boehringer Ingelheim International GmbH Roi Shternin, Founder & Chief Patients Officer, Chronically
- How to engage patients in clinical research?
- 3 reasons why patients are not involved in the design and preparation phase of a clinical trial
- 3 reasons why patients should be involved in the design and preparation phase of a clinical trial
- How can patient feedback contribute to a more successful clinical trial
- Where do I start with engaging patients in a clinical trial?
Rasmus Hjorth, Head of Communication, James Lind Care
- The problem with “patients at the centre”….
- Always a bridesmaid and never a bride!
- The need for T.R.U.S.T.
- The courage to change
Angela King, Independent Patient Advocate, Independent Cancer Patients’ Voice
- How to harness patient power
- Using data to improve care
- Opportunities for partnership
Robert Mitchell-Thain, CEO, PBC Foundation
- 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 to access in real life?
Moderator:
Panelists
Carole Scrafton, Director & Co-Founder, Flutters and Strutters Rasmus Hjorth, Head of Communication, James Lind Care
Naomi Litchfield, Director, Patient Advocacy, Bionical Emas
Dr. Sally Dews, Senior Medical patient partnership Manager, Pfizer
- Understanding the drivers for innovation in pharma
- Partnering with patients and placing patient well-being at the core of all initiatives
- Real-world data and patient-reported outcomes presents the power and the potential to redesign healthcare
- Innovative approaches for direct-to-patient assume significant importance for driving patient-centricity
- Technologies that enhance the patient-centricity in pharma
Moderator:
Panelists: Gabor Purman, Patient Advocacy Director, Kyowa Kirin International Carole Scrafton, Director & Co-Founder, Flutters and Strutters Roi Shternin, Founder & Chief Patients Officer, Chronically
Janik Jaskolski, Chief Product Officer and Co-Founder, Semalytix
Robert Mitchell-Thain, CEO, PBC Foundation