Miss Stephanie Long1
1Menzies School Of Health Research, Darwin, Aus
Context: Prioritising First Nations voice in kidney health is a fundamental aim of the INFERR Clinical trial. The INFERR study investigators are working with First Nations kidney patients through the formation of the Top End Medicinal Iron Research & Study Advisory Group. The advisory group has participated in the study from the beginning, throughout research conduct, analysis and reporting of results. The purpose of the Advisory Group is to provide advice regarding culturally safe conduct of the INFERR research project and to advocate regarding social, cultural and health issues important for dialysis patients across the Top End.
Objectives: To disseminate learnings regarding the development of an inclusive and effective advisory group for clinical trials organsied by and consisting of First Nations people, and to present the key outcomes and achievements of the advisory group.
Key Messages: The development of the advisory group is dependent on the relationships between the INFERR study researchers and group members. The INFERR study’s genuine support for this group, willingness to listen to and address their concerns, has seen in return true investment from members in which key goals for both parties have been achieved.
Conclusion: The Advisory Group members have ensured renal patients’ standpoints are at the forefront of the INFERR study. The group have helped construct INFERR educational tools enabling better communication between dialysis patients and study researchers. The group have also given voice to key concerns of dialysis patients within their clinics for study doctors to advocate for changes in service delivery.
Biography:
Steph is a proud Anmatyerre and Maranunggu women from Darwin. Steph is Currently working at Menzies School of Health as a Research Assistant for the INFERR Study. Steph holds a Bachelor of Arts Degree from the University of Melbourne majoring in Indigenous studies and sociology. Steph is now aiming to further her education and is currently studying a Master of Public health at Charles Darwin University to further upskill and work towards her career goals in leading better community engagement by privileging Indigenous patients voices within the health system.