Voluntary self-disclosed Indigenous identity of patients in four Canadian health care settings: A multiple-site qualitative case study.

Abstract

Objectives: The lack of Indigenous health care data in Canada makes it challenging to plan health care services and inform Indigenous leadership on the health care needs of their respective Nations and communities. Several Canadian health care organizations have implemented a voluntary Indigenous identifier of patients within their electronic medical records. This study examines facilitators and barriers to implementing such a voluntary self-reported Indigenous identifier, from the perspective of key stakeholders who work at four Canadian health providers where an Indigenous identifier has been implemented.

Methods: The four Canadian sites comprise three hospitals and one health authority. At each site, key stakeholders participated in semi-structured qualitative interviews. Interviews were transcribed and coded. Relevant documents that were publicly available or provided by each site were reviewed.

Results: There were four primary findings. First, for the introduction of an Indigenous identifier to be successful there must be pre-existing strong and trusting relationships between Indigenous communities and health care organizations. Second, health care organizations must provide training for those who ask clientele to self-identify as Indigenous, to overcome issues such as any patient backlash. Third, for the relationship between Indigenous people and health organizations to flourish, data governance must be Indigenous-led. Finally, the collection of Indigenous identifier data can enhance Indigenous health care services and health care service planning and delivery.

Conclusions: Due to the ongoing distrust of government and health care services among Indigenous peoples and communities, special considerations are required prior to the implementation of an Indigenous identifier. Of primary importance is how health care organizations can contribute to Indigenous data governance and minimize potential harms associated with the collection of such data. The findings of this study can be used to guide other health care sites and Indigenous leaders aspiring for more robust health data by implementing voluntary Indigenous identity data collection.