Better data for better health equity in Ontario

This piece is part of our series on the administrative data needs of Canadian advocacy groups and nonprofit service providers. This is part of our work to create a policy agenda on administrative data-sharing in collaboration with a Canadian civil society coalition.

In Canada, immigrants are more likely to face greater barriers to accessing healthcare, compared to those born in Canada. Within immigrants, those who come as refugees tend to face even greater barriers because of their experiences of forced migration, trauma, and displacement. Those who are non-status face unique and acute barriers to accessing healthcare because of their lack of legal status. Access Alliance is one nonprofit working on tackling these systemic health inequities head-on. The organization provides a combination of primary health care services, community programs, and settlement services to vulnerable populations across various locations in Toronto. They also conduct community-based research and engage in advocacy around social determinants of health inequities.

Access Alliance is one of the nonprofits helping Powered by Data better understand how government administrative data could be repurposed towards advocacy and how improved digital systems can improve service provision in Canada. We spoke to Tayyeba Darr, the organization’s Research and Policy Coordinator, about how improved access to administrative health data could help support the healthcare organization’s ability to improve quality of care and advance advocacy work—as well as allow for better benchmarking between different community health centres.

Access to OHIP demographic data could help community health centres anticipate program demands

Every year, over 500,000 people living in Ontario are excluded from access to OHIP (the Ontario Health Insurance Plan) due to their immigration status. Access Alliance provides primary care services to many of these non-insured newcomers, non-status residents, and temporary foreign workers—as well as those on the 3-month OHIP waiting period; some of whom are Canadian citizens who have left the country for an extended period of time. The ability to have timely access to OHIP data would have a significant impact in informing Access Alliance’s work. Knowing how many refugees, new immigrants, and returning Ontario residents in a given catchment area have applied for OHIP or are on the 3-month waiting list would help the organization anticipate how many people they will be serving. From a health equity lens, Darr spoke about how timely access to demographic data could also help shed light on barriers to health access in Ontario. Currently, Access Alliance is able to access some OHIP data through partnerships. However, not everyone in the sector has developed such partnerships. Greater nonprofit access to OHIP data for all would enable a better understanding of the barriers specific demographics face, and better plan programming to suit client needs by linking information on income-level, immigration status, and access to OHIP.

Access to administrative records is impeded for individuals without health insurance

Primary care doctors require timely access to hospital medical records to enable the provision of quality health care to their patients. These administrative records can help tell the story of the patient: the facilities they encounter, the health professionals that have been involved in their care, as well as their medication and medical test history. In Ontario, Connecting Ontario is an online portal that provides secure, real-time access to digital health records. The portal is used by primary care doctors to access the administrative hospital records of insured clients.  However, because this portal only captures data on those with insurance, access to hospital data at primary care clinics is impeded for non-insured individuals.

Without real-time access from the Connecting Ontario portal, access to medical records from hospitals can sometimes take up to two weeks. This delay can impact the quality of health service delivery for individuals without OHIP. When doctors are not able to access their medical records, non-insured individuals are responsible for remembering and relaying their medical history to their primary care provider. Because refugees and migrants are overrepresented amongst those without health insurance, some face language barriers, making the responsibility of relaying medical history information even more taxing.

Standardized data-collection between community health centres would enable better benchmarking

Data collection also plays an important role in the health equity work of Access Alliance. For example, in their primary care clinic intake forms, Access Alliance collects data on race, ethnicity, and immigration status.  While these data are useful for their own program planning, they currently are unable to do consistent benchmarking against other community health centres in the region, as most organizations do not collect this information, or may collect it in a different way. Standardizing how these data are collected—and sharing aggregate administrative data between clinics could help nonprofits understand the health service landscape at a bigger scale, identify gaps in service provision, and allow them to build on what works.

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While better access to administrative data could improve health services for non-insured individuals, further work is needed to understand the digital infrastructure changes that would be required by community health service providers. For example, Darr discussed how the uptake of new technologies in community health centres is affected by a lack of clarity around patient privacy in an increasingly digital healthcare environment. Such confidentiality and data security issues are particularly important to consider for vulnerable communities.  

The slow rate of uptake in new technologies means that in general, digital healthcare data quality remains poor; Darr highlighted how many community health centres still depend on electronic fax systems for referrals and paper records. In Ontario, 18 per cent of family doctors and 38 per cent of specialists working in the community have not yet made the conversion to electronic medical records.  As we move towards an increasingly digitized sector, Darr believes that issues around digital health data quality and patient data confidentiality must first be addressed before we are able to have a fulsome discussion about administrative data-sharing in Ontario’s healthcare sector.  

Like our discussions with other service providers and advocacy groups, our conversation with Darr highlighted not only the need for improved access to administrative data in the sector, but also the nuance and complexity that comes with conversations around data-sharing. We’re grateful that organizations like Access Alliance are taking the time to help us better understand the impact administrative data can have on advancing equitable service delivery efforts in Canada. You can learn more about the organization at http://accessalliance.ca/.