Ethics review of multisite studies: the difficult case of community‐based Indigenous health research

Abstract

Researchers have longstanding concerns about the logistical and administrative burdens posed by ethics review of multisite studies involving human participants. Centralised ethics review, in which approval by one committee has authority across multiple sites, is widely touted as a strategy for streamlining the process. The Harmonisation of Multi‐centre Ethical Review (HoMER) project is currently developing such a system for Australia. It is unclear how centralised review will work for multisite Indigenous health research, where the views of local stakeholders are important and community consultation is mandatory. Our recent experience in conducting the National Indigenous Eye Health Survey (NIEHS) shows how elaborate the current ethics approval and community consultation processes can be, and points to several lessons and ideas to guide pending reforms.

Review of the prevalence of diabetic retinopathy in Indigenous Australians

“…The challenges in conducting population‐based research involving Indigenous Australians are well documented . Indigenous Australian studies included for this analysis were limited predominantly to volunteer cohorts because of the difficulties in collecting community‐derived, population‐based data.…”

Navigating the maze: ethics approval pathways for intellectual disability research: Table 1

“…As indicated in table 1, in common with other researchers in Australia1 6 and internationally,7 8 a major issue in gaining the requisite multiple ethics committee approvals for our study was the sequential nature of the process. The requirement for approval from one committee before forwarding the application to the next involved significant time delays, in part, due to inflexibility in the submission schedules of the various supervisory agencies.…”

Impact of diabetes on eye care service needs: the National Indigenous Eye Health Survey

“…For Indigenous adults without diabetes with evidence of vision impairment (distance and/or near vision loss), an eye examination every 2 years is suggested. Primary ethics approval was obtained from the Human Research Ethics Committee of the Royal Victorian Eye and Ear Hospital . The study was conducted in accordance with the tenets of the Declaration of Helsinki as revised in 2000.…”