Case story

Planning and Managing a Study Across Queensland

In 2006 researchers from the Indigenous Health Research Unit  at Queensland Institute of Medical Research conducted a biomedical study comparing cancer stage at diagnosis, treatment and survival of Indigenous and non-Indigenous people treated in the public health system in Queensland. The study found that Indigenous Queenslanders had poorer survival rates than non-Indigenous Queenslanders, despite similar proportions being diagnosed with late-stage cancer. Prior to this it had been assumed that Indigenous people were diagnosed much later in their disease progression, when the disease was more difficult to treat.  

Meetings and discussions were held with Indigenous groups across Queensland as part of the research transfer of these findings. As a result of these meetings, it was felt that further investigation was required to ascertain the reasons for differences in survival.

Researcher Suzanne Moore and Gail Garvey, Coordinator, Indigenous Health Research Unit, describe the process used to ensure there was Indigenous input and management in the follow-on study.

The [Indigenous Health Research Unit] invited Indigenous health professionals working in the area of cancer care to… discuss the viability of conducting a study to investigate this further. The group consisted of Indigenous Health Workers from the Royal Brisbane and Women’s Hospital, the Indigenous Cervical Screening Unit, and The University of Queensland General Practice, Inala, representatives from the Queensland Aboriginal and Islander Health Council and several other agencies from around South East Queensland. The proposal for a new study was outlined and a non-Indigenous PhD student who would undertake this project was introduced to the group. After discussion, recommendations were made and the proposal was endorsed in principle by the group.

An Indigenous Reference Group was then established to provide advice and cultural guidance to both the student and the academic supervisory panel throughout the project, and to assist with the research transfer process. Terms of reference were drafted and Indigenous Health representatives and Indigenous people working in cancer care, were invited to be members of the group. The Group was to convene twice a year, either face to face or via phone, until the end of 2009.

Ethical approval to conduct the study was sought from the Human Research Ethics Committees (HREC) at QIMR, Queensland Health and the HREC’s of fourteen Health districts and hospitals through-out Queensland. Approval was also sought from the Queensland Aboriginal and Islander Health Council and the Aboriginal and Torres Strait Islander Health Strategy Unit. Plans to conduct the study were also presented to the Indigenous Health Workers attending the annual cancer care training workshop at the Queensland Cancer Council. Comments and suggestions from this group were considered and lead to the further development of the study.

The strengths of the Reference Group were most obvious in the early stages when advice on culturally appropriate content was sought, and are becoming increasing apparent in the final stages, when transfer of the research findings to the community is being addressed.

Because there was little or nothing to report for extended periods in this long-term epidemiological project, the reporting requirements of the terms of reference could not always be fulfilled to the letter.

The Reference Group were key contributors to the success of the project and their services are gratefully and warmly acknowledged.