ONDRI’s Aim 4 is focused on health systems research to complement ONDRI’s clinical research in neurodegenerative diseases, stroke and dementia. Aim 4 builds off the province-wide health administrative data held at ICES.
ONDRI: Please tell us about ICES and what data it collects.
Susan: ICES is a not-for-profit research institute encompassing a community of research, data and clinical experts. ICES is privileged to have access to a broad set of health administrative databases that are generated when Ontarians interact with the health system. These interactions include physician visits, hospitalizations, medication prescriptions and other services. Data can be assembled over long periods of time and across populations to understand the health issues facing Ontarians and guide clinical care and health policy.
ONDRI: How did ONDRI’s Aim 4 come about and what is its scope?
Laura: Aim 4 came about via a strong track record of previous research in the areas of aging and dementia conducted by Susan. When ONDRI was being renewed, co-lead Dr. Richard Swartz approached Susan to help broaden the scope of ONDRI to include population-level data for all Ontarians living with neurodegenerative diseases, stroke and dementia. She then brought me on board to help lead what became known as ONDRI’s Aim 4.
Our goal is to harness the power of the ICES data and the cross-disease focus of ONDRI, to make significant contributions to the understanding of the health system use and outcomes of people living with neurodegenerative diseases in Ontario. Our research to date has focused on: understanding how people with dementia transition into different care settings over time; investigating sex differences in potentially inappropriate medication use in persons with dementia; describing the care of patients with ALS prior to their diagnosis; exploring potentially-disease modifying drugs in Parkinson’s disease; and examining differences in care needs by sex of persons with stroke as they enter long-term care.
More recently, during the COVID-19 pandemic, we have focused on understanding how health system patterns in persons with neurodegenerative diseases changed across sectors of our health system (e.g., hospital, community, and home care), compared to other older adults. This information can be useful in planning for future waves of the pandemic and understanding shifts to virtual care and the long-term outcomes of the pandemic.
ONDRI: How do you decide what areas to focus your studies on?
Susan: When deciding what studies to undertake, we consult with a variety of stakeholders. ONDRI’s Patient and Community Advisory Committee (PCAC) has helped us understand what areas are important and relevant to people living with neurodegenerative diseases and their care partners. We also consult with disease charities such as the Alzheimer’s Society of Ontario and ALS Society of Canada. We meet quarterly with our Scientific Advisory Committee, made up of clinicians and researchers from ONDRI, who also advise on the direction and scope of our work.
ONDRI: What has been the impact of the work done under Aim 4? For patient care? For the community? For policy or advocacy?
Laura: Our work has generated “real-world” evidence to help us understand how, where and when persons with neurodegenerative diseases, stroke and dementia connect with the health system in Ontario. Our studies have described the continuing impact of these diseases on large numbers of Ontarians, that will likely continue to grow as the population ages. Our work has been published in BMJ Open, Muscle & Nerve, Pharmacoepidemiology & Drug Safety, Canadian Journal of Neurological Sciences, and Drugs & Aging and has been featured by media outlets such as the Globe and Mail and Healio.com. We are connected to governmental and non-governmental policymakers, health charities and various researchers provincially, nationally and internationally and have presented our findings at many scientific conferences.
For more on Aim 4.