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, Research Project Manager, Ottawa Hospital Research Institute

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

Putting Patients First: Embracing Patient-Centricity in Clinical Research

Mr. Hashemian will discuss patient-centricity in clinical research, emphasizing the need to prioritize the well-being and perspectives of patients throughout the research process. We will discuss the practical implementation of patient-centric strategies, such as leveraging technology for patient-centric data collection, and fostering collaborations between patients, investigators, and sponsors. 311

Presenter: Mohammad Hashemian, MSc, CEO, Ethica Data

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 partiipation 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