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

Author:

Booker-Vaughns Juanita1,Rosini Dawn2,Batra Romilla3,Chan Garrett K.4,Dunn Patrick5,Galvin Robert6,Hopkins Ernest7,Isaacs Eric8,Kizzie-Gillett Constance L.9,Maguire Margaret10,Navarro Martha1,Reddy Pidatala Neha11,Vaughan William12,Welsh Sally13,Williams Pluscedia114,Young-Brinn Angela1,Van Allen Kaitlyn15,Cuthel Allison M.15ORCID,Liddicoat Yamarik Rebecca16,Flannery Mara15,Goldfeld Keith S.17,Grudzen Corita R.18

Affiliation:

1. College of Medicine, Charles R. Drew University of Medicine & Science, Los Angeles, CA, USA

2. College of Medicine, University of Florida Shands Hospital, Gainesville, FL, USA

3. Senior Care Action Network (SCAN) Health Plan, Long Beach, CA, USA

4. HealthImpact, Oakland, CA, USA

5. American Heart Association, Dallas, TX, USA

6. The Blackstone Group, New York, NY, USA

7. The Phoenix Group Foundation, Atlanta, GA, USA

8. Department of Emergency Medicine, University of California San Francisco, San Francisco, CA, USA

9. Lillie's Circle of Care, Streamwood, IL, USA

10. Cambia Health Solutions, Portland, OR, USA

11. American Cancer Society, Atlanta, GA, USA

12. Patient Advocacy, Fairfax, VA, USA

13. Hospice and Palliative Nurses Association, Carnegie, PA, USA

14. The Lundquist Institute/Harbor-UCLA Medical Center, Torrence, CA, USA

15. Ronald O. Perelman Department of Emergency Medicine, New York University Grossman School of Medicine, New York, NY, USA

16. Department of Medicine, Tibor Rubin Long Beach Veteran Affairs, Long Beach, CA, USA

17. Department of Population Health, New York University Grossman School of Medicine, New York, NY, USA

18. Division of Supportive and Acute Care Services, Memorial Sloan Kettering Cancer Center, New York, NY, USA

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.

Funder

Patient-Centered Outcomes Research Institute

Publisher

SAGE Publications

Subject

Health Policy,Health (social science),Leadership and Management

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