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What's in This For You? What's in This For Me?: A Win-Win Perspective of Involving Study Advisory Committee Members in Palliative Care Research

Authors :
Juanita Booker-Vaughns EdD, MEd
Dawn Rosini
Romilla Batra MD, MBA
Garrett K. Chan PhD, APRN, FAEN, FPCN, FAAN
Patrick Dunn PhD, MS, MBA, FAHA
Robert Galvin MD
Ernest Hopkins
Eric Isaacs MD, FACEP, FAAEM
Constance L. Kizzie-Gillett
Margaret Maguire JD
Martha Navarro
Neha Reddy Pidatala MBBS
William Vaughan
Sally Welsh MSN, RN, NEA-BC
Pluscedia Williams
Angela Young-Brinn MBA
Kaitlyn Van Allen MPH
Allison M. Cuthel MPH
Rebecca Liddicoat Yamarik MD
Mara Flannery
Keith S. Goldfeld DrPH, MS, MPA
Corita R. Grudzen MD, MSHS, FACEP
Source :
Journal of Patient Experience, Vol 11 (2024)
Publication Year :
2024
Publisher :
SAGE Publishing, 2024.

Abstract

Study advisory committees (SACs) provide critical value to clinical trials by providing unique perspectives that pull from personal and professional experiences related to the trial's healthcare topic. The Emergency Medicine Palliative Care Access (EMPallA) study had the privilege of convening a 16-person SAC from the project's inception to completion. The study team wanted to understand the impact this project had on the SAC members. In this narrative, we use reflective dialogue to share SAC members’ lived experiences and the impact the EMPallA study has had on members both personally and professionally. We detail the (1) benefits SAC members, specifically patients, and caregivers, have had through working on this project. (2) The importance of recruiting diverse SAC members with different lived experiences and leveraging their feedback in clinical research. (3) Value of community capacity building to ensure the common vision of the clinical trial is promoted.

Subjects

Subjects :
Medicine (General)
R5-920

Details

Language :
English
ISSN :
23743743 and 23743735
Volume :
11
Database :
Directory of Open Access Journals
Journal :
Journal of Patient Experience
Publication Type :
Academic Journal
Accession number :
edsdoj.f0b5d824a94446c8a3b6efd02a86a7c8
Document Type :
article
Full Text :
https://doi.org/10.1177/23743735231224562