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

Juanita Booker-Vaughns; Dawn Rosini; Romilla Batra; Garrett K Chan; Patrick Dunn; Robert Galvin; Ernest Hopkins 3rd; 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

doi:10.1177/23743735231224562

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

J Patient Exp. 2024 Jan 2:11:23743735231224562. doi: 10.1177/23743735231224562. eCollection 2024.

Authors

Juanita Booker-Vaughns¹, Dawn Rosini², Romilla Batra³, Garrett K Chan⁴, Patrick Dunn⁵, Robert Galvin⁶, Ernest Hopkins 3rd⁷, Eric Isaacs⁸, Constance L Kizzie-Gillett⁹, Margaret Maguire¹⁰, Martha Navarro¹, Neha Reddy Pidatala¹¹, William Vaughan¹², Sally Welsh¹³, Pluscedia Williams^{1

14}, Angela Young-Brinn¹, Kaitlyn Van Allen¹⁵, Allison M Cuthel¹⁵, Rebecca Liddicoat Yamarik¹⁶, Mara Flannery¹⁵, Keith S Goldfeld¹⁷, Corita R Grudzen¹⁸

Affiliations

¹ College of Medicine, Charles R. Drew University of Medicine & Science, Los Angeles, CA, USA.
² College of Medicine, University of Florida Shands Hospital, Gainesville, FL, USA.
³ Senior Care Action Network (SCAN) Health Plan, Long Beach, CA, USA.
⁴ HealthImpact, Oakland, CA, USA.
⁵ American Heart Association, Dallas, TX, USA.
⁶ The Blackstone Group, New York, NY, USA.
⁷ The Phoenix Group Foundation, Atlanta, GA, USA.
⁸ Department of Emergency Medicine, University of California San Francisco, San Francisco, CA, USA.
⁹ Lillie's Circle of Care, Streamwood, IL, USA.
¹⁰ Cambia Health Solutions, Portland, OR, USA.
¹¹ American Cancer Society, Atlanta, GA, USA.
¹² Patient Advocacy, Fairfax, VA, USA.
¹³ Hospice and Palliative Nurses Association, Carnegie, PA, USA.
¹⁴ The Lundquist Institute/Harbor-UCLA Medical Center, Torrence, CA, USA.
¹⁵ Ronald O. Perelman Department of Emergency Medicine, New York University Grossman School of Medicine, New York, NY, USA.
¹⁶ Department of Medicine, Tibor Rubin Long Beach Veteran Affairs, Long Beach, CA, USA.
¹⁷ Department of Population Health, New York University Grossman School of Medicine, New York, NY, USA.
¹⁸ Division of Supportive and Acute Care Services, Memorial Sloan Kettering Cancer Center, New York, NY, USA.

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.

Keywords: engagement; palliative care; stakeholders; study advisory committee.