Virtual Seminar: Engaging Patients in the Research Process

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

Banner announcing workshop

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.