An evaluation of a data linkage training workshop for research ethics committees

Abstract

BackgroundIn Australia research projects proposing the use of linked data require approval by a Human Research Ethics Committee (HREC). A sound evaluation of the ethical issues involved requires understanding of the basic mechanics of data linkage, the associated benefits and risks, and the legal context in which it occurs. The rapidly increasing number of research projects utilising linked data in Australia has led to an urgent need for enhanced capacity of HRECs to review research applications involving this emerging research methodology. The training described in this article was designed to respond to an identified need among the data linkage units in the Australian Population Health Research Network (PHRN) and HREC members in Australia.MethodsFive one-day face to face workshops were delivered in the study period to a total of 98 participants. Participants in the workshops represented all six categories of HREC membership composition listed in the National Health and Medical Research Centres’ (NHMRC) National Statement on Ethical Conduct in Human Research. Participants were assessed at three time points, prior to the training (T1), immediately after the training (T2) and 8 to 17 months after the training (T3).ResultsNinety participants completed the pre and post questionnaires; 58 of them completed the deferred questionnaire. Participants reported significant improvements in levels of knowledge, understanding and skills in each of the eight areas evaluated. The training was beneficial for those with prior experience in the area of ethics and data linkage as well as those with no prior exposure.ConclusionsOur preliminary work in this area demonstrates that the provision of intensive face to face ethics training in data linkage is feasible and has a significant impact on participant’s confidence in reviewing HREC applications.

Ethical Considerations in Using Social Media to Engage Research Participants: Perspectives of Australian Researchers and Ethics Committee Members

“…This unmet need reflects researchers' and HREC members' perceived difficulty in considering the ethical implications of SM-based research, their limited confidence and knowledge of ethical issues in this context, and the increasing presence of SM as a research tool. Specialized training workshops can build HREC members' confidence, knowledge, and ethical expertise in other contexts (Tan, Flack, Bear, & Allen, 2015). We therefore recommend that research institutions and ethics committees develop and offer practical training on SM research ethics, and encourage both researchers and HREC members to participate.…”

Health data linkage research in Australia remains challenging

“…This is compounded by the fact that HREC personnel lack understanding of multijurisdictional privacy implications and the processes of data linkage itself. A national scoping study in 2011 conducted by the PHRN identified that 87% of staff requested more training to equip themselves with the necessary skills . The PHRN offers training modules to improve understanding of the processes in data linkage for HREC, but unfortunately these remain optional.…”

The Population Health Research Network - Population Data Centre Profile

“…In the early years of the PHRN it was recognised that the establishment of data centres in all jurisdictions would require human research ethics committees (HRECs) in all jurisdictions to understand data linkage and the ethical issues that arise from the use of linked data, particularly without consent. The PHRN developed a training workshop for HRECs which was run across the country [12].…”