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
Year: 2024
Type: article
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.
Source: Journal of Patient Experience
Authors: Juanita Booker-Vaughns, Dawn Rosini, Romilla Batra, Garrett K. Chan, Patrick Dunn, Robert Galvin, Ernest Hopkins, Eric Isaacs, Constance L. Kizzie-Gillett, Margaret Maguire, Martha Navarro, Neha Reddy Pidatala, William Vaughan, Sally Welsh, Pluscedia Williams, Angela Young-Brinn, Kaitlyn Van Allen, Allison M. Cuthel, Rebecca Liddicoat Yamarik, Mara Flannery, Keith S. Goldfeld, Corita R. Grudzen
Institutions: Charles R. Drew University of Medicine and Science, UF Health Shands Hospital, University of Florida, American Heart Association, Blackstone (United States), University of California, San Francisco, Blackwood, Cambia Health Solutions (United States), American Cancer Society, Hospice and Palliative Nurses Association, The Lundquist Institute, Harbor–UCLA Medical Center, New York University, Tibor Rubin VA Medical Center, Memorial Sloan Kettering Cancer Center
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $1,380
Awards: G107604883, G458390912
OpenAlex ID: W4390542696