Research has demonstrated that children from underserved and marginalized sociodemographic groups have poorer cancer outcomes and experiences.  As such, ACCESS is committed to advancing health equity across all aspects of childhood cancer research and care. Meaningful equity work begins with the collection of potentially sensitive sociodemographic data to document disparities and build responsive programs that can bridge gaps in care, outcomes, and experiences. However, children and families can and have been harmed by the inappropriate collection, use, distribution, and analysis of this sensitive information. Recognizing this, the ACCESS Social Justice, Indigenization & Inclusion Committee has championed the responsible collection, management, and use of sensitive sociodemographic data across all our work and activities within ACCESS by:

1. Conducting a full review of all project proposals submitted to ACCESS to ensure alignment with our ACCESS Equity Statement and best practices on the collection and use of sensitive sociodemographic data;
2. Surveying clinical research personnel in the childhood cancer community to better understand their previous training, as well as their comfort, and capacity to appropriately collect sensitive sociodemographic data;
3. Developing resources for the childhood cancer community to standardize the process and provide guidance on how to collect this data within the Canadian childhood cancer community, including the Guidance Document on the Collection and Use of Sociodemographic and/or Other Potentially Sensitive Data;
4. Providing educational sessions across our network on equity and its application to our work and activities; and
5. Collaborating with relevant organizations to ensure the harmonization of sensitive data collection training and practices between institutions and among collaborative groups.

Altogether, these efforts form a foundational framework that strengthens ACCESS’ ability to promote equitable research and care while respecting the dignity, agency, and safety of patients and families. Ongoing work will further expand on the resources and education available to the community to ensure that the collection and use of sensitive sociodemographic data advances – not undermines – health equity in childhood cancer research and care.

For more information, please contact Tricia Schneider.