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New study uses multi-regional data to examine the expansion of virtual end-of-life care during the pandemic

Kieran Quinn, a white man with brown hair. Text reads: DASH Researcher Spotlight Kieran Quinn. Health Data Research Network Canada logo at top.

 A new study using multi-regional data from across Canada aims to evaluate the changes to virtual end-of-life care brought about by the pandemic. According to Dr. Kieran Quinn, a Clinician Scientist at Sinai Health in the Department of Medicine and Institute of Health Policy, Management and Evaluation at the University of Toronto, more people are choosing to spend their final days at home rather than in hospital. But there are relatively few home-based care providers available in Canada to support the needs of adults who wish to die at home.

“It’s unclear if the rapid expansion of virtual care during the COVID-19 pandemic has minimized or magnified existing challenges,” said Dr. Quinn, whose study used Health Data Research Network Canada’s Data Access Support Hub (DASH) to access administrative health data from multiple provinces. 

End-of-life care is a personalized approach that supports the physical, emotional and spiritual needs of people who are dying and their families. It can include things like pain and symptom management, mental health support and assistance in making important health decisions. Virtual palliative and end-of-life care is an emerging area of practice that care providers have reported can help improve faster access to services. It can also better include family members and care providers from different disciplines in important conversations. 

Dr. Quinn’s first-hand experience caring for patients at the end of their lives propelled him into research aimed at improving the quality and accessibility of end-of-life care. Prior to his study, Identifying Service Gaps in Virtual End-of-Life Care to Inform Health Policy Across Canada, there was limited research on who received virtual care, whether it can reduce emergency room visits and the need for hospitalization, and if it can improve how people experience death.  

“Before the pandemic, virtual end-of-life care was not widely accessible, particularly for people who were unfamiliar with it or had limited access to technology. Access was also limited for those who belonged to a racial or ethnic minority group or were of lower socioeconomic status,” said Dr. Quinn. “Experts raised concerns that these potential care inequities could worsen with the expanded use of virtual care.”

Dr. Quinn saw the rapid increase in virtual end-of-life care as a unique opportunity to study the impacts of new policies implemented by each province as part of their pandemic response. One such policy was the introduction of specialized fee codes to incentivize the use of virtual care. Using administrative health data from British Columbia, Alberta, Ontario and Newfoundland, Dr. Quinn’s research team hopes to understand whether this type of policy could exacerbate existing disparities in how accessible these services are to different groups. “Reporting on the effects and outcomes of these interventions is an essential exercise in ensuring that these programs are achieving their intended effect without introducing potentially harmful, unintended consequences,” Dr. Quinn noted.

The study uses administrative health data, which are generated through routine encounters with health care programs and services, accessed via HDRN Canada’s DASH. DASH is a one-stop shop for health researchers who require administrative data from more than one province or territory. It serves as a single intake point for researchers, confirming the eligibility and feasibility of data requests, offering cost estimates, and providing centralized data access support from study conceptualization through to data delivery.

According to Dr. Quinn, DASH supported his study by acting as a “connector” to other data centres across the country, helping to coordinate the project and facilitate communication. “Multi-regional data allow us to study health care delivery in a way that reflects the diversity of Canada as a country, as opposed to individual provinces and territories,” he explained. “Using DASH to access administrative health data in multiple provinces to understand healthcare delivery in Canada was critical to this project.”

“More often, we are limited to doing this research within a local health region or within a specific province or territory,” he added. “Using multi-regional data allows us to evaluate health policies across provinces and territories so that we can understand, compare and contrast the differences between them and better understand healthcare delivery at a national level.” 

With the data from each province now in hand, Dr. Quinn’s research team will begin conducting analyses, writing manuscripts for publication in peer-reviewed journals and developing knowledge translation materials. “Overall, many of our findings could provide a valuable foundation for future research on virtual end-of-life care and could inform health policy that will support its continued use,” he said. “Virtual end-of-life care holds great promise for helping to ensure people get the best care possible when and where they need it.”

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