Evaluation of the role and function of the PneuMum Study Indigenous Reference Group as a model for conducting research involving children in the Northern Territory

• Reach:

  NT

• Focus area:

  Indigenous

• Status:

  Completed

• Evaluated:

  No

Overview

Generally, there is a lack of published literature describing practical steps for conducting ethical research in Indigenous communities. This project is investigating the role of maternal pneumoccocal vaccination as a strategy to combat middle ear infections. This is known as the PneuMum study. The community consultation process undertaken by Menzies was considered integral to the successful implementation of the first vaccine trial to be conducted among Indigenous Australians.

One of the major initiatives arising from the community consultation process was the establishment of an independent Indigenous Reference Group (IRG). It was later requested by the IRG that an evaluation take place on their role and function in developing the capacity of Indigenous communities to influence the conduct and processes of the PneuMum study.

This was a qualitative study which involved stakeholder interviews and relevant documents reviewed with a number of key findings. Importantly, the IRG is a successful model of community engagement and participation in the research process with instances of the IRG demonstrating its capacity to affect the progress of the study. However, there are several identifiable factors that have restricted its influence. The findings have implications for current and future IRG models for both Menzies and the wider research community.

A number of recommendations emerged from the evaluation. These included:

• Improving communication of issues identified in IRG meetings to both Menzies executive and to the community.
• Ensuring PneuMum staff and participants know who IRG members are.
• Addressing the ability to attend regularly without incurring financial and other burdens.
• Providing education and other areas of capacity building for IRG members.

There were two potential future IRG models suggested with a recommendation that regional IRGs be established covering a range of research areas rather than individual IRGs for each study.

Menzies School of Health Research abstract

Contacts

Menzies School of Health Research
Email: Margaret.Landrigan@menzies.edu.au

Links

• View information: Evaluation of the role and function of the PneuMum Study Indigenous Reference Group as a model for conducting research involving children in the Northern Territory
• View website: Menzies School of Health Research