Journal of Patient Experience (Jan 2024)

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 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

DOI
https://doi.org/10.1177/23743735231224562
Journal volume & issue
Vol. 11

Abstract

Read online

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.