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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.

Juanita Booker-VaughnsDawn RosiniRomilla BatraGarrett K ChanPatrick DunnRobert GalvinErnest HopkinsEric IsaacsConstance L Kizzie-GillettMargaret MaguireMartha NavarroNeha Reddy PidatalaWilliam VaughanSally WelshPluscedia WilliamsAngela Young-BrinnKaitlyn Van AllenAllison M CuthelRebecca Liddicoat YamarikMara FlanneryKeith S GoldfeldCorita R Grudzen
Published in: Journal of patient experience (2024)
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.
Keyphrases
  • clinical trial
  • palliative care
  • healthcare
  • chronic kidney disease
  • end stage renal disease
  • ejection fraction
  • prognostic factors
  • social media
  • emergency medicine
  • open label
  • peritoneal dialysis