Letter to the Editor

To the Editor;

We applaud Matheson et al (2012, June/July issue) for their critically important paper on the challenges of ethics procedures in multicentre studies in Canada. We hope that this important paper spurs discussion and action around the country. We believe that a national standardized approach to ethical review processes are essential to encourage researchers to undertake and participate in multicentre research efforts across Canada.

The experiences of Matheson and colleagues in terms of gaining access to conduct a multicentre paediatric rheumatology trial mirrors our experiences in TREKK (TRanslating Emergency Knowledge for Kids), a Networks of Centres of Excellence (Ottawa, Ontario) funded knowledge mobilization centre. In this four-year program, we are building networks between our established infrastructure, Paediatric Emergency Research Canada (a well-established network of Canadian paediatric emergency departments with a successful track record of conducting multicentre paediatric research) and 35 general emergency departments (EDs). These general EDs span nine provinces and one territory, and they are located in urban and rural areas dispersed throughout Canada. Building and nurturing these knowledge networks is critically important to improving children’s health outcomes because we know that the majority of children receive health care in general – not paediatric – EDs (1,2).

The first year of the TREKK research program involves seeking to understand the information needs and preferences of the health care professionals working in general EDs and the parents seeking care for their children in such locations by deploying two custom iPad (Apple Inc, USA) questionnaire applications. While this is a novel approach to collecting data in this setting, it is not an insignificant task. We were required to seek research ethics approval at 23 universities and hospitals to be able to collect these important data, which will guide the remaining three years of funding. This task has consumed our efforts for the past nine months and has involved the dedicated efforts of many individuals across the country.

Before exploring this process, we received consultation from a research ethics administrator with regard to strategically navigating multiple ethics processes. Despite this consultation process, it was difficult to convince research ethics boards of the relative ‘low risk’ nature of the two questionnaires (ie, no identifiable health information was collected) and a number of documents were required to obtain approval, including a study protocol.

Throughout this process, we have repeatedly been surprised that despite every ethics board in Canada being guided by the same principles outlined in the Tri-Council Policy Statement-2 (2010), the operationalization of these guiding principles varies greatly and has resulted in considerable expense in human, time and financial resources. The current economic challenges facing Canadian research funding agencies demand that solutions be created to ensure that research resources are being utilized efficiently. We believe that a standardized national ethics application would be a strategic step. It is simply not fiscally viable to continue with the same approach in which local boards operationalize national policies differently. We urge others to engage in this important discussion and we advocate for change so that research resources are all strategically utilized. This is particularly poignant in paediatrics, where multicentre projects are required to obtain sufficiently large sample sizes.

Sincerely,Shannon D Scott PhD RN, Lauren Albrecht BEd,
Liza Bialy BSc MPH, Stephen Freedman MDCM MSc,
Lisa Given PhD, Lisa Hartling BScPT MSc PhD,
David Johnson MD,Mona Jabbour MD MEd FRCPC,
Terry Klassen MD FRCPC and the TREKK team