Equity is essential in the collection and use of health data

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Important conversations about health equity in Hamilton surfaced, re-emphasizing the need for action across all systems and services. We know that health inequities exist and continue to harm. Specifically, there have been many calls for change at the governance, policy and service delivery levels in health care settings.

Recently, Hamilton Health Sciences announced the launch of its electronic health information system, EPIC. Community leaders asked important questions about the new system about whether and how data about historically marginalized groups is included in the new system. Questions of whether and how the social determinants of health and well-being are addressed in the new electronic medical record (EMR) have not been adequately answered given that it is a multi-million dollar initiative.

Responses indicated that training on collecting “equity” data, its use, how to collect data respectfully, why it is important to collect, as well as consultation with affected communities were not included and therefore, while the capability exists within EPIC, these priorities have been conspicuously sidelined from the launch of EPIC.

Failure to pay attention to equitable health systems and processes will continue to leave health equity issues as an afterthought, unnecessary, or too complex to integrate. These practices perpetuate systemic inequalities.

Recent research by Hamilton doctors titled Race-Based data collection between COVID-19 in-patients: A retrospective chart review, found that limited hospital data can inhibit research into racial disproportionality among hospitalized patients. The article states, “Adequate data collection is needed to study racial health disparities in hospital settings.”

The Journal of the American Medical Informatics Association article titled Collecting Transgender Data in the Electronic Health Record: Current Concepts and Issues, Forms of Discrimination Highlighted Have Been Codified in EMRs, Codes and Criteria of diagnosis and billing, including the systematic nomenclature of medicine Clinical terms.

There are many resources that offer guidance for health officials to address these issues. The Canadian Institute for Health Information has publicly released specific guidelines on racial and Indigenous identity data collection and health reporting. The Data Standards for Identifying and Monitoring Systemic Racism have been in existence since 2017 to support compliance with the Anti-Racism Act. Several other resources have already been developed and disseminated to support health equity work with respect to data collection. The Black Health Equity Working Group developed the PAME framework, and Toronto Health Equity also developed specific resources for health equity and measurement.

It’s not too late to change course, Hamilton Health Science can act now to commit to providing resources and implementing the necessary changes to its EPIC health information deployment to respectfully care health equity issues that he has identified as priorities. We learned with the COVID pandemic that our healthcare systems are in fact nimble, flexible and responsive to continuous improvement if we felt it was important to do so.

The Hamilton Anti-Racism Resource Centre, local health equity leaders and affected community groups are ready and willing to help implement these urgent and necessary next steps.

Lyndon George is Executive Director of the Hamilton Anti-Racism Resource Center

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