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
{"title":"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.","authors":"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","doi":"10.1177/23743735231224562","DOIUrl":null,"url":null,"abstract":"<p><p>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.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735231224562"},"PeriodicalIF":1.6000,"publicationDate":"2024-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10768616/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Patient Experience","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1177/23743735231224562","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/1/1 0:00:00","PubModel":"eCollection","JCR":"Q3","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
引用次数: 0
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.