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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.
Booker-Vaughns, Juanita; Rosini, Dawn; Batra, Romilla; Chan, Garrett K; Dunn, Patrick; Galvin, Robert; Hopkins, Ernest; Isaacs, Eric; Kizzie-Gillett, Constance L; Maguire, Margaret; Navarro, Martha; Reddy Pidatala, Neha; Vaughan, William; Welsh, Sally; Williams, Pluscedia; Young-Brinn, Angela; Van Allen, Kaitlyn; Cuthel, Allison M; Liddicoat Yamarik, Rebecca; Flannery, Mara; Goldfeld, Keith S; Grudzen, Corita R.
Afiliação
  • Booker-Vaughns J; College of Medicine, Charles R. Drew University of Medicine & Science, Los Angeles, CA, USA.
  • Rosini D; College of Medicine, University of Florida Shands Hospital, Gainesville, FL, USA.
  • Batra R; Senior Care Action Network (SCAN) Health Plan, Long Beach, CA, USA.
  • Chan GK; HealthImpact, Oakland, CA, USA.
  • Dunn P; American Heart Association, Dallas, TX, USA.
  • Galvin R; The Blackstone Group, New York, NY, USA.
  • Hopkins E; The Phoenix Group Foundation, Atlanta, GA, USA.
  • Isaacs E; Department of Emergency Medicine, University of California San Francisco, San Francisco, CA, USA.
  • Kizzie-Gillett CL; Lillie's Circle of Care, Streamwood, IL, USA.
  • Maguire M; Cambia Health Solutions, Portland, OR, USA.
  • Navarro M; College of Medicine, Charles R. Drew University of Medicine & Science, Los Angeles, CA, USA.
  • Reddy Pidatala N; American Cancer Society, Atlanta, GA, USA.
  • Vaughan W; Patient Advocacy, Fairfax, VA, USA.
  • Welsh S; Hospice and Palliative Nurses Association, Carnegie, PA, USA.
  • Williams P; College of Medicine, Charles R. Drew University of Medicine & Science, Los Angeles, CA, USA.
  • Young-Brinn A; The Lundquist Institute/Harbor-UCLA Medical Center, Torrence, CA, USA.
  • Van Allen K; College of Medicine, Charles R. Drew University of Medicine & Science, Los Angeles, CA, USA.
  • Cuthel AM; Ronald O. Perelman Department of Emergency Medicine, New York University Grossman School of Medicine, New York, NY, USA.
  • Liddicoat Yamarik R; Ronald O. Perelman Department of Emergency Medicine, New York University Grossman School of Medicine, New York, NY, USA.
  • Flannery M; Department of Medicine, Tibor Rubin Long Beach Veteran Affairs, Long Beach, CA, USA.
  • Goldfeld KS; Ronald O. Perelman Department of Emergency Medicine, New York University Grossman School of Medicine, New York, NY, USA.
  • Grudzen CR; Department of Population Health, New York University Grossman School of Medicine, New York, NY, USA.
J Patient Exp ; 11: 23743735231224562, 2024.
Article em En | MEDLINE | ID: mdl-38188534
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.
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Texto completo: 1 Base de dados: MEDLINE Idioma: En Ano de publicação: 2024 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Idioma: En Ano de publicação: 2024 Tipo de documento: Article