Throughout its existence, the Ontario Brain Institute (OBI) has proven that partnerships are critical to advancing health research. The Ontario Neurodegenerative Disease Research Initiative (ONDRI), an OBI-funded Integrated Discovery Program, has brought together a Patient & Community Advisory Committee (PCAC), composed of patients with neurodegenerative conditions such as dementia, care partners, and individuals from health charities, to create a genuinely beneficial research collaboration.

Over the course of the COVID-19 pandemic, ONDRI initiated several studies examining how people living with these diseases continue to access healthcare during the pandemic. These studies were conducted using data covering the entire province, with the input of patients and care partners solicited at different stages of the investigation. Once a study was concluded, representative feedback from patients and caregivers, along with information from healthcare records, was collected and incorporated into the design of future studies.

Leading the charge for this type of work at ONDRI are Dr. Susan Bronskill and her colleague, Laura Maclagan. Dr. Bronskill leads Aim 4 of ONDRI, which focuses on health systems, and is a Senior Scientist & Lead of Life Stage Research Program at ICES (formerly known as the Institute for Clinical Evaluative Sciences) as well as a Professor at the Institute of Health Policy, Management & Evaluation at the University of Toronto. Maclagan is a Senior Epidemiologist in the Life Stage Research Program.

One such ONDRI-ICES study recently revealed that family physician visits of people with neurogenerative diseases rapidly shifted from in-person to virtual during the first wave of the pandemic. The PCAC provided observations from their lived experiences that were used to understand and interpret anecdotal feedback from other patients and care partners. They reported that while virtual or telephone visits were convenient as they did not have to leave home to receive care, reliable internet was required. The study also showed that there were large disruptions to acute care services such as hospitalizations, and while home care visits initially declined, they have rapidly returned to historical levels. This type of population-based research is distinctive as it shows how patterns differ across health sectors.

"We can look at the patterns separately, for example, comparing people with dementia and Parkinson’s disease to other older adults, and determine whether they had similar experiences. We also look at the entire healthcare system and see how each sector was impacted.”

Dr. Susan Bronskill, ONDRI's Aim 4 Lead

The data's breadth and depth is incredibly useful. Dr. Bronskill shares that this research is being used nationally and provincially, including in a pan-Canadian study looking at how the pandemic impacted persons with Alzheimer's disease and related dementias. Furthermore, the expertise of the ONDRI team to selectively look at groups of people living with neurodegenerative diseases from the province-wide health records supported the rapid examination of health system changes during the pandemic. Says Dr. Bronskill: “We could generate these tables and figures quickly and therefore help lead other provinces to examine these trends."

Another of the study's unique attributes is its simplicity. Understanding the impact of the pandemic on health service use is key to informing planning for future waves to enable continued access to care for people with neurodegenerative diseases. "We are not testing a hypothesis but describing what is happening to people across the province," shares Maclagan.

And the research is ongoing: Dr. Bronskill and Maclagan's next plan is to examine the ongoing use of virtual care by persons with neurogenerative diseases across the province.