U.S. Department of Health & Human Services
Virtual Seminar: Engaging Patients in the Research Process
Wed, 8/26/2020 - 1:00pm - 3:30pm
Overview
The NIH HEAL Initiative will host the virtual seminar Engaging Patients in the Research Process, on August 26, 2020, to increase the understanding of how 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 patient engagement experts will discuss opportunities, challenges, and benefits, as well as best practices to incorporate patients in the scientific process. The discussions will include relevant ethical and policy issues, patient enrollment, community engagement practices and more. Attendees will learn how patient engagement has transformed study processes and outcomes for the better.
View HEAL's slide presentation pdf 1.64 MB.
View FDA's slide presentation pdf 2.12 MB.
View workshop meeting summary pdf 559.28 KB.*
Videocast of the event
Watch the videocast of the Engaging Patients in the Research Process Virtual Seminar from August 26, 2020.
Virtual Seminar: Engaging Patients in the Research Process
Agenda
1:00-1:15 pm Welcome and Objectives
Dr. Rebecca Baker, Director, Helping to End Addiction Long-term (HEAL) Initiative, NIH
1:15-1:30 pm Lessons from the FDA Patient Focused Drug Development Program
CAPT Robyn Bent, RN, MS, US Public Health Service, Director, Patient Focused Drug Development, FDA CDER
1:30-2:25 pm Panel: Challenges, Opportunities, and Goals of Patient Engagement
Dr. Walter J. Koroshetz, Director, National Institute of Neurological Disorders and Stroke (moderator)
CAPT Robyn Bent, RN, MS, US Public Health Service, Director, Patient Focused Drug Development, FDA CDER
Dawn P. Edwards, CEO of New York State CKD Champions, and Wellness Ambassador, The Rogosin Institute
Dr. Paul Kimmel, MD, MACP, FASN, Senior Advisor, Program Director HOPE, National Institute of Diabetes and Digestive and Kidney Diseases
Christin Veasley, Co-founder & Director, Chronic Pain Research Alliance
2:25 pm Discussant Responses
Lynn Debar, PhD Senior Investigator, Kaiser Permanente Washington Health Research Institute, affiliate professor at the Department of Psychiatry, University of Washington
Mary Stroud RN, CCRP Project Manager Recruitment Innovation Center a part of The Trial Innovation Network, Vanderbilt Institute for Clinical and Translational Research
2:45 pm Questions and Answers Session
Dr. Walter J. Koroshetz, Director, National Institute of Neurological Disorders and Stroke (moderator)
3:25-3:30 pm Closing Remarks
Dr. Rebecca Baker, Director, Helping to End Addiction Long-term (HEAL) Initiative, NIH
3:30 pm Adjourn
HEAL Patient Engagement Workgroup and Planning Committee
Alexis Bakos, PhD, M.P.H., R.N.
National Cancer Institute
Danielle Haney, PhD
National Institute of Neurological Disorders and Stroke
Paul Kimmel, MD
National Institute of Diabetes, Digestive and Kidney Diseases
Marlene Peters, BSN, RN, RRT
National Institute of Neurological Disorders and Stroke
Meera Raja
National Institute of Health, Office of the Director
Erin Spaniol, MS, OTR, MPH
National Institute of Health Office of the Director
*This summary is being prepared for 508-compliance.