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

Kate M Tan,Natasha L Bear,Judy A Allen,Felicity S Flack

doi:10.1186/s12910-015-0007-y

Kate M Tan, Natasha L Bear + Show 2 more

Open Access

https://doi.org/10.1186/s12910-015-0007-y

Copy DOI

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.

Highlights

In Australia research projects proposing the use of linked data require approval by a Human Research Ethics Committee (HREC)
The findings revealed a need for training of a number of groups including data custodians and researchers, training for HREC members in the area of data linkage was identified as a priority by a number of the data linkage units consulted [10]
The respondents in the scoping study took the view that members of HRECs did not have a sufficient understanding of the processes of data linkage to equip them to engage with the ethical issues and that there was a need for specialised training

Summary

Introduction

In Australia research projects proposing the use of linked data require approval by a Human Research Ethics Committee (HREC). 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. In 2009 the Australian Government invested heavily in data linkage, recognising the central role it will play in Australia’s research environment in the future [5]. This investment saw the establishment of data linkage units representing each of the remaining states and territories as well as two national data linkage units. The Population Health Research Network (PHRN) is a network of these data linkage units across Australia.

Objectives

Methods

Results

Discussion

Conclusion