Programme 2021
27-30 September 2021, Online
The agenda is currently in production. If you have an interest in speaking, or have any suggestions as to speakers or topics we should cover, please contact Steve Coldicott
Programme from our March 2021 Event
8-11 March 2021, Online
Scroll down for the full March agenda.
You can view recordings of the March 2021 sessions by registering here
REGISTER HERE
Session 1 - Monday March 8, 2021
#PMFPatientWeek 14:00
Precision Medicine - CATCH 22?
We implement what we know. But to know more, we first have to implement. Considering we are only at the start of what is going to come, how do we take that leap of faith? And whose responsibility is it?
Moderator
Dr Bettina Ryll, Founder, Melanoma Patient Network, Cancer Mission- board member, European Commission
Panel
Euan Ashley BSc, Professor of Medicine & Genetics, Associate Dean, Precision Health, Stanford University
Dr. Volker Liebenberg, Medical Director EMEA, Illumina
Anne R. Pariser, M.D., Director Office of Rare Diseases Research, National Center for Advancing Translational Sciences, National Institutes of Health, DHHS
15:05
Are Patients the Missing Part of the Drug Development Puzzle?
- We are witnessing increased involvement in research and regulation, but how can we ensure greater involvement in drug development?
- Increasing transparency, trust and subsequently collaboration amongst all stakeholders
- Involving patients across the entire product lifecycle
- Barriers, opportunities, and examples of patient involvement in the drug development process
- Exploring how engagement at an early stage can improve overall patient experience and outcomes
Moderator
Dr Bettina Ryll, Founder, Melanoma Patient Network, Cancer Mission- board member, European Commission
Panel
Rita Magenheim MD, Physician, Researcher, Patient Advocate
Ella Balasa, Patient Advocate
Begonya Nafria Escalera, Patient Engagement in Research Coordinator, Sant Joan de Déu Chidren’s Hospital (Spain)
Session 2 - Tuesday March 9, 2021
#PMFPatientWeek 14:00
Patient Centric Data Collection and Sharing
- Understanding public views on data-driven technologies such as machine learning and its role in health research/care
- Whose data is it anyway?
- Assessing if is now time to begin removing the regulatory barriers to data sharing, and how this can be achieved
- Ethical considerations of patient data collection
Natalie Banner, Lead - Understanding Patient Data (UPD), A Wellcome initiative
Nick Schneider, Lead, Division on New Technologies and Data Use, German Federal Ministry of Health
15:05
Public and Patient Involvement (PPI) and Engagement (PPE) in Research
- Ensuring we involve patient from an early stage and at all stages
- How to link up the right participants with the right researchers
Moderator
Sara Badreh, Senior Health and Research Projects Manager, European Cancer Patient Coalition
Panel
Jillian Hastings Ward, Chair of the Participant Panel, Genomics England, Board Member, CureGRIN
Dave Bjork, Patient Advocate and Research Evangelist
Sharon F. Terry, President and CEO, Genetic Alliance
Larry Mróz PhD, Research Services Lead, BC SUPPORT (SUpport for People and Patient-Oriented Research and Trials), British Columbia
Session 3 - Wednesday March 10, 2021
#PMFPatientWeek 14:00
The Pivotal Role of Real-World Data and Real-World Evidence in Healthcare Decision Making
- Finding someone that “looks like me” - can it provide comfort and confidence in treatment pathway decisions?
Chair
Gilliosa Spurrier-Bernard, Vice-President of Melanoma Patients Network Europe, Chair WECAN, President of Melanome France
Panel
Miriam Döbeli, Co-Founder and President, Colorectum
Tjebbe Tauber, Patient Advocate, Inspire2Live
Chris Carrigan, Expert Data Adviser, use MY data
15:05
Education and Communication
- Educating Patients and Healthcare Professionals about precision medicine
- No one wants to be a patient, but not until we are, do we begin to educate ourselves – can education help to change this paradigm?
- Patients rely upon and trust their clinician – how can we ensure the clinician is armed with all the tools available to them?
- Understanding informed consent
- Steps to achieving shared decision making in the clinical setting
Chair
Gilliosa Spurrier-Bernard, Vice-President of Melanoma Patients Network Europe, Chair WECAN, President of Melanome France
Panel
Dany Bell, Strategic Advisor Treatment, Medicines, Genomics, Macmillan Cancer Support
Tamara Hussong Milagre, founder and president, EVITA
Piarella Peralta, Patient Advocate, Inspire2Live
Session 4 - Thursday March 11, 2021
#PMFPatientWeek 14:00
Putting our Faith in Technology
- Understanding the public perception of new technologies
- AI is our friend, but it will not replace the human touch, challenges the myths.
- Health tech and telemedicine as a pathway to treatment choices
Ilkka Räsänen, Senior Lead, IHAN®- Human-driven data economy, Sitra
Kevin Chaney, Senior Program Manager, Scientific Advancement Branch within the Office of the National Coordinator for Health IT (ONC)
15:05
Where to Next?
Attendees – TURN ON YOUR WEBCAM AND MIC
The final session will provide an opportunity for anyone to “join the stage” and put forward their views as to where they want to see things heading. This fully interactive session will be a stepping-stone to further collaboration and provide a guide to future meetings content.
