PRIORITISING INDIGENOUS VOICES & STORIES IN KIDNEY RESEARCH – THE TOP END MEDICINAL IRON RESEARCH & STUDY ADVISORY GROUP
Miss Stephanie Long1, Mrs JOAN KOOPS, Mr MARK MAYO, Professor SANDAWANA WILLIAM MAJONI, Professor ALAN CASS, Mrs JANE NELSON, Mrs ARCHANA KHADKA SHAPKOTA, Mrs CHERYL ROSS, Mrs LANI HEWETT
1Menzies School Of Health Research, Darwin, Australia
Aim: To disseminate learnings regarding the development of an effective advisory group for clinical trials organsied by and consisting of Indigenous people, and to present the key outcomes and achievements of the advisory group.
Background: Prioritising Indigenous voices in kidney health is a fundamental aim of the INFERR Clinical trial. The INFERR study investigators are working with Indigenous 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.
Method: Reference Group meetings were held every quarter at Menzies school of Health in Darwin. Members designed and determined the agenda of meetings to provide feedback and updates to the study team.
Results: The Advisory Group members have ensured dialysis 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.
Conclusions: 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.
Presentation Slides PDF – Click here
Biography:
Steph is a proud Aboriginal woman from Darwin, NT. Steph is currently working at Menzies School of Health as a Research Officer for the INFERR study. Steph holds a Bachelor of Arts Degree from the University of Melbourne majoring in Indigenous Studies and Sociology. Steph is continuing to work towards leading better community engagement by privileging Indigenous patients’ voices within the health system.