Virtual Workshop: Engaging Patients in the Research Process

Wed, 8/26/2020 - 1:00pm - 3:30pm

Registration

The virtual event is FREE and open to the public, but registration is required.

Overview

The NIH HEAL Initiative will host the virtual workshop Engaging Patients in the Research Process, on August 26, 2020, to increase the understanding of the need to incorporate patients’ perspectives and insights at all levels and phases of clinical studies, from conception and design through recruitment, and dissemination of findings. Patients and experts in patient engagement will present case studies to illustrate opportunities, challenges, and benefits, as well as best practices. The discussions will include relevant ethical and policy issues, data sharing, patient enrollment, and more. Attendees will learn how patient engagement has transformed clinical study processes and outcomes for the better.

Virtual Meeting Information

Information about accessing the virtual meeting will be shared in the coming days.

Agenda

1:00-1:10 pm Welcome and Objectives

Dr. Rebecca Baker, Director, Helping to End Addiction Long-term (HEAL) Initiative, National Institutes of Health (NIH)

1:10-1:35 pm Introduction: Case Study of a Trial Utilizing Patient Engagement

CAPT Robyn Bent, RN, MS, US Public Health Service, Director, Patient Focused Drug Development, FDA CDER

1:35-2:15 pm Panel: Challenges, Opportunities, and Goals of Patient Engagement

Dr. Walter J. Koroshetz, Director, National Institute of Neurological Disorders and Stroke (moderator) 

Dawn P. Edwards, CEO of New York State CKD Champions, and Wellness Ambassador, The Rogosin Institute

Christin Veasley, Co-founder & Director, Chronic Pain Research Alliance

Dr. Travis Rieder, Assistant Director of Education Initiatives & Research Scholar, Johns Hopkins Berman Institute of Bioethics

2:15-3:00 pm Questions and Answers Session 

Dr. Walter J. Koroshetz, Director, National Institute of Neurological Disorders and Stroke, NIH (moderator) 

3:00-3:30 pm Closing Remarks 

Dr. Rebecca Baker, Director, Helping to End Addiction Long-term (HEAL) Initiative, NIH

3:30 pm Adjourn