Diverse and Small Group Data Co-Design

By Vera Roberts

In a new co-design activity next month, we will work with stakeholders on the challenge of working with small group and highly diverse data for evidence-based decisions.

Government policy decisions, and adjudicative rulings that interpret and reinforce them, are increasingly based on the collection and analysis of “evidence” through processes that rely on large data sets and statistical proof. These processes neglect the needs of diverse and marginalized groups, such as people with disabilities, since their experiences are dismissed as anecdotal or as producing outlier data. And yet it is often members of marginalized groups who are most impacted by policy decisions, and to whom these policy changes do the most harm.

In this design challenge we will co-design:

  1. Acceptable forms of evidence, proof and data that could be produced by a highly diverse group of small minorities and outliers who are marginalized, and
  2. Alternative strategies and tools for minorities to collect and provide this evidence to policy makers.

The recent policy changes to Medical Assistance in Dying (Bill C7) provide one example of this challenge. In this case, the Vulnerable Persons Secretariat was called upon to provide evidence to support their argument that the bill would negatively impact the lives of people with disabilities. Although much evidence was collected in the form of individual narrative accounts, anecdotes, and research from other jurisdictions around the world, it was not possible to meet the requirements for statistical proof. This topic will provide a focus for our co-design, with the aim that what we design in this scenario can be applied to other small minority data challenges.

To learn more about this case study, please see Catherine Frazee’s testimony to the Standing Committee on Justice and Human Rights, November 10, 2020.