Patient Engagement

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2024 Agenda

Fri., Sept. 27 1:15 to 2:00                                     Track: Patient Engagement

Patient Engagement in Orphan Drug Research

A rare-disease patient engagement framework is proposed to meaningfully collect patient input and experience to build upon real-world evidence, compensate for evidence uncertainties, and, ultimately, support decision-makers in their funding procedures. 309

Presenter: Nahya Awada, MSCR, CCRP, Senior Research Program Manager, Calian Health

Fri., Sept. 27 2:05 to 2:50                                     Track: Patient Engagement

The Importance of Engaging Young People in Research

What drives research with children and young people and why engagement and involvement of young people is important for research? The speaker will explore what participation in research means to young people and share a framework for engaging young people and their parents in research through the GOSH Young person’s advisory group. 311

Presenter: Lorraine Hodsdon, BSc, MSc, RN, Head of Nursing Research and Innovation, Co-Director NIHR GOSH Clinical Research Facility

Fri., Sept. 27 3:25 to 4:10                                     Track: Patient Engagement

Why Minorities Fail to be Recruited in Early Trials

Mr. Young will discuss reasons for reduced trial participation among diverse population. He will also outline mechanisms/strategies to increase clinical trial participation among minority ethnic participants. 313

Presenter: Michael Young, Co-Founder, Lindus Health

Fri., Sept. 27 4: 15 to 5:00                                    Track: Patient Engagement

Development of a Process to Share Plain Language Summaries of Research Results with Participants

Sharing of clinical research results with participants who contribute to the research helps promote inclusivity and transparency by making scientific information more accessible. At Princess Margaret Cancer Centre, feedback received from a survey of over 500 of our clinical trial participants indicated that the top factor influencing their decision to participate in future studies was obtaining the overall research results. 315

Presenter: Katherine Zeman, BSc, MSc, CCRP, Patient Engagement & Education Specialist, University Health Network