ACCESS Shares Best Practices on Sensitive Data Collection At the COG Conference

In September, Stacey Marjerrison and Caroline Wai, ACCESS Co-Leads, Social Justice, Indigenization & Inclusion Committee, were invited to deliver a presentation during the Canadian education session at the Children’s Oncology Group‘s (COG) conference.

Their session focused on the importance of collecting sensitive data (particularly race- and ethnicity-based data), as well as ensuring that researchers and staff are properly trained to collect such information in ways that are context- and country-specific.

This education session was prompted by ACCESS’s support of pediatric cancer patients in Canada’s participation in, “AALL2131: An International Pilot Study of Chemotherapy and Tyrosine Kinase Inhibitor with Blinatumomab”, by providing access to next-generation sequencing for disease monitoring — a resource not routinely available in Canada but required to participate in the trial. Upon reviewing the trial’s data collection forms during the review of the ACCESS proposal for support for the AALL2131 trial, the response options for race- and ethnicity-based questions were found to be inappropriate for the Canadian context.

In response, members of the SJII Committee, including Stacey and Kathy Brodeur-Robb, Member at Large of the ACCESS Senior Leadership Committee and Executive Director of C17, are collaborating with various project leads at the COG to revise the response options for race- and ethnicity-based questions for patients at Canadian centres, and develop an approach for Canadian centres when tasked with COG response options mandated by the US federal government.