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Friday, June 18 • 12:00pm - 1:00pm
#520 OD: Patient Engagement in the Early Stage of Medicines’ Development: A Co-Created How-to Guide and its Piloting Results

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Component Type: Forum
Level: Intermediate

Patient engagement is ideally done in a systematic way and early on, but there is very little evidence and best practices showing patient engagement and its benefits as early as in the discovery and preclinical phases. This panel session presents a co-created ‘How-to’ guide for patient engagement in the early stages of medicines’ development and initial results from organizations piloting the guide. This session walks through the main points in the new guide that helps industry and researchers to make plans to involve patients in a systematic way early in the discovery phase and presents a four-step approach to guide research teams through. Two piloting cases have started to implement the guide and will share their early learnings to inspire more organizations and research teams to involve patients as true partners. Download the guide and join us as we take you through the key parts and guide you on your journey to involving patients in early research.

Learning Objectives

Implement and plan patient engagement in the early stages of medicines’ development WITH patient partners; Define how to identify and reach out to potential patient partners and distinguish the possibilities and concerns regarding PE in this stage; Apply tips and lessons learned in your everyday work to implement patient engagement in the early stages of research.


Chi Pakarinen, MA


Carole Sian Scrafton, MBA

Schiffon Wong, MPH

Merlin Williams, MS

Dawn P. Richards, PhD

Oleksandr Gorbenko, MD, PhD

avatar for Schiffon Wong

Schiffon Wong

Executive Director, Global Evidence and Value Development, Global R&D, EMD Serono, United States
Schiffon has interdisciplinary experience partnering with diverse stakeholders to improve healthcare quality and outcomes. She provides global strategic leadership in the use of diverse methods to develop evidence that demonstrates the value innovative medicines provide to patients... Read More →
avatar for Chi Pakarinen

Chi Pakarinen

R&D Patient Engagement Lead, GI, Takeda, United States
Chi Pakarinen has worked with The Synergist/ Patient Focused Medicines Development in the past 5 years to bring stakeholders together to collaborate and co-create fit-for-purpose tools to involve patients in medicines development. Her experience and expertise lies in driving co-creation... Read More →
avatar for Dawn Richards

Dawn Richards

Director, Patient and Public Engagement, Clinical Trials Ontario, Canada
Dawn Richards, PhD, lives with rheumatoid arthritis and is a volunteer Vice President of the Canadian Arthritis Patient Alliance. She advocates for arthritis awareness, access to treatments, patient participation in decision-making and as research collaborators, and the importance... Read More →
avatar for Merlin Williams

Merlin Williams

Senior Consultant, Executive Insight, Switzerland
Merlin is a Senior Consultant at Executive Insight, a specialized healthcare consulting firm supporting biopharmaceutical companies. Merlin has life science research experience in neurodegenerative disease and is passionate in enabling patient engagement and true patient-focussed... Read More →
avatar for Oleksandr Gorbenko

Oleksandr Gorbenko

Global Patient Centricity Director, Ipsen, United Kingdom
Dr Oleksandr Gorbenko is an expert in public health, patient advocacy and engagement with overall 20 years’ experience in pharma. He graduated as a medical doctor (general practice) in O.Bogomolets National Medical University and Shupyk National Medical Academy of Postgraduate Education... Read More →

Carole Scrafton

Co-Founder, Chair, Patient Advocate, FibroFlutters Patient Advovacy Organisation, United Kingdom
As a patient with multiple chronic/rare disease, I have developed a vocation in patient advocacy. Using the skills developed from gaining my Master Business Studies I have set up and developed a local support group into a patient Advocacy Organisation with a Social Media Network for... Read More →

Friday June 18, 2021 12:00pm - 1:00pm EDT
TBD Virtual Event Horsham, PA 19044