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.

IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES Journal of Patient Experience Pub Date : 2024-01-02 eCollection Date: 2024-01-01 DOI:10.1177/23743735231224562
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
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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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这对你有什么好处?这对我有什么好处?让研究咨询委员会成员参与姑息关怀研究的双赢视角》。
研究咨询委员会(SAC)通过提供与试验的医疗保健主题相关的个人和专业经验所产生的独特观点,为临床试验提供了重要价值。急诊医学姑息治疗方案(EMPallA)研究从项目开始到结束,有幸召集了一个由 16 人组成的 SAC。研究小组希望了解该项目对 SAC 成员的影响。在本叙述中,我们通过反思性对话来分享 SAC 成员的亲身经历以及 EMPallA 研究对成员个人和职业产生的影响。我们详细介绍了 (1) SAC 成员(特别是患者和护理人员)通过参与该项目获得的益处。(2) 招募具有不同生活经历的 SAC 成员并利用他们在临床研究中的反馈意见的重要性。(3) 社区能力建设的价值,以确保促进临床试验的共同愿景。
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来源期刊
Journal of Patient Experience
Journal of Patient Experience HEALTH CARE SCIENCES & SERVICES-
CiteScore
2.00
自引率
6.70%
发文量
178
审稿时长
15 weeks
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