Building a culture of equity in health research

“Not enough research in Canada is being done with a health equity lens. It’s a problem because it means the results emanating from that research are not fully representative of Canada’s population and do not elucidate enough information on certain populations – usually those that need better access to healthcare and information,” states Dr. Ninan Abraham, CoVaRR-Net’s Director of Equity, Diversity, Inclusion, and Indigeneity (EDI&I), Professor in Microbiology and Immunology and Zoology at the University of British Columbia, and former Associate Dean, Equity, Diversity, and Inclusion in the UBC Faculty of Science.

“The pandemic highlighted this gap in many ways,” adds Dr. Claire Betker, CoVaRR-Net’s Associate Director of EDI&I and Scientific Director of the National Collaborating Centre for Determinants of Health (NCCDH). “Due to social, cultural, and economic inequities, COVID-19 has had a disproportionate impact on disadvantaged communities leading to more severe health and economic outcomes. More research needs to be done with a health equity lens to ensure policy makers and organizations can target their interventions and make healthcare in Canada more equitable,” she adds.

The good news is that the light shone on this issue during the pandemic seems to be moving the needle. “The CoVaRR-Net leadership team was very open and willing to put more emphasis on health and employment equity from very early on,” says Dr. Abraham, who is a member of CoVaRR-Net’s executive committee, along with Executive Director Dr. Marc-André Langlois and the Leads/Co-Leads of the 10 Pillars. “Outside of our Network, there is also increased talk of using a health equity lens in research and policymakers and organizations are asking for it. That said, the research community in Canada have a long way to go in terms of learning the importance of health equity and how to achieve it.”

Defining health equity

“An aspirational definition of health equity would be that all Canadians would have fair access to, and could act on, opportunities to reach their full health potential and were not disadvantaged by social, economic, and environmental factors,” says Dr. Betker. “Putting health equity into action means integrating equity into every single health decision we make all of the time.”

Dr. Betker has helped CoVaRR-Net researchers understand how central health equity is to the work they do and in mitigating the more severe health impacts of COVID-19 on disadvantaged communities. “This collaboration with a national network of predominantly biomedical researchers on the critical public health topic of COVID variants has enabled CoVaRR-Net researchers to more effectively get their findings and evidence to public health decision-makers in ways that support better health outcomes for underrepresented communities,” she says.

Health equity in collecting, storing and sharing tissue samples

Dr. Abraham and Dr. Kimberly Huyser, CoVaRR-Net’s Indigenous Engagement, Development and Research (CIEDAR) Pillar Lead worked together to integrate more health equity into CoVaRR-Net’s Universal Data and Biological Materials Transfer Agreement (UDBMTA). “The current UDMBTA, developed by CoVaRR-Net and vetted by more than 26 Canadian research institutions, was built with our input on some key points regarding adherence to OCAP® (Ownership, Control, Access, and Possession) principles. The agreement requires that if biological samples from Indigenous communities are to be collected, stored, and distributed by the CoVaRR-Net Biobank for research, the researchers must abide by OCAP® principles,” explains Dr. Abraham.

The principles of OCAP® establish how First Nations’ data, information, and cultural knowledge should be collected, accessed, used, and shared. For First Nations, working through OCAP® can support their path to data sovereignty, and for health researchers OCAP® can help guide ethical ways of working with First Nations who choose to share their data, information, and cultural knowledge. “All CoVaRR-Net executive members are required to do OCAP® training, but when EDI&I did listening tours, we learned that some Pillars wanted all their researchers to do OCAP® training since they’re involved in collecting patient information,” adds Dr. Abraham. “While OCAP® principles are specific to First Nations, these kinds of principles can also inform and guide health researchers on how to collect, store, and share data and tissue samples when working with people from other underrepresented, underserved communities.”

How to improve health equity in research

Going forward, Dr. Abraham is encouraging CoVaRR-Net researchers to use a health equity lens when gathering information from patients for their studies to allow for broader and deeper demographic and equity-based analysis in their findings. “I would love to see that any CoVaRR-Net researcher who is going to acquire patient samples do so in a way that measures not only sex and gender, but other social determinants of health — such as racial identity, urban or rural, housed or unhoused, socioeconomic status, and disabilities – which can affect health outcomes,” he says.

“Health-based researchers have an opportunity to become health equity advocates by collaborating with clinicians to get representative patient samples that help to facilitate and promote equitable delivery of healthcare services to underserved communities through their research,” Dr. Abraham adds.

CoVaRR-Net’s Public Health, Health Systems and Social Policy Impact Pillar (Pillar 8) is building a national survey, Trust, governance and the COVID-19 pandemic, that reaches out to assess underserved communities, as well as the larger population, on their levels of trust in public health institutions, particularly in relation to COVID-19 outbreaks. The team’s literature scan so far suggests that public health institutions need to target factors such as systemic racism and socioeconomic inequality to improve levels of public trust. “We’ve given the Pillar 8 researchers feedback on best practices for working on the ground with target underserved communities in ways that are respectful and inclusive, and in not using language that stigmatizes or excludes disadvantaged groups,” says Dr. Abraham.

“Building relationships with underserved communities and applying a health equity lens to the recruitment of patients and use of their data for studies is exceptionally important,” concludes Dr. Betker. “Health researchers have the capacity to become advocates who help public health officials and organizations do what’s needed to make access to healthcare equitable and support all Canadians in reaching their full health potential.”