Dr. Maria J. Santana is passionate about patient experience. As a clinical pharmacist, healthservices researcher, patient and family-centred care scientist and assistant professor in the department of Pediatrics and Community Health Sciences at the University of Calgary, understanding what matters to patients and their families has always been the focus of her work. It also led to her role as the provincial lead for patient engagement for the Alberta Strategy for Patient-Oriented Research Support Unit (abSPORU), an initiative led by the Canadian Institutes of Health Research (CIHR).
First announced in 2011, SPOR is a national initiative that funds, develops and improves health-care policies through patient-oriented research. As part of the initiative there are 11 provincial and territorial SPOR SUPPORT units across the country including abSPORU.
What is Patient-Oriented Research?
SPOR defines “patient” as an all-encompassing and inclusive term to describe individuals who have personal experience with a health issue, as well as informal caregivers, including family members and friends.
Every individual has their own unique needs, values, and preferences. Health practitioners involved in patient-oriented research engage with patients to determine those specific needs, then examine the care that is currently available and modify it to incorporate those needs. Essentially, through SPOR, patients are invited to be partners in the research process.
“As a practitioner, as a clinician, there are a lot of things that we could do better, but there is only one way to make it better, and it’s working with the patients and their families,” says Santana. “We ask them, ‘What is important to you?’”
How does AbSPORU work?
The Alberta SPOR SUPPORT Unit (AbSPORU) was created in 2013, and is jointly funded by Alberta Innovates and CIHR. Its research is supported by seven platforms including data, consultation and research services, pragmatic clinical trials, methods support and development, career development, knowledge translation and, lastly, patient-engagement, which Santana leads. Each platform provides valuable assets to the research, such as the development of training programs for researchers and health practitioners, tools to better analyze datasets, resources for patients for clinical trial participation and more.
The patient engagement platform is a critical aspect of AbSPORU, as one of its guiding principles is that researchers and health-care providers collaborate with patients and their families throughout the entire research process. As the provincial lead for patient engagement, Santana ensures this happens so that esearch results are always relevant to the patient.
How does AbSPORU benefit people living with dementia?
Living with dementia can have a significant impact on quality of life. There are also social determinants to be considered such as access to care and housing. Patient-oriented research addresses these concerns by engaging with people living with dementia, as well as their families and caregivers. Currently, there are several provincial research teams supporting patient-oriented research in dementia. For instance, Santana’s patient engagement team works with Dr. Carole A. Estabrooks, who is the scientific director of Translating Research in Elder Care (TREC) program. TREC is focused on developing solutions to improve the quality of care and life for residents living in nursing homes and the quality of work life for their paid caregivers. TREC also hosts a citizen advisory group made up of people living with dementia and their caregivers who contribute to all aspects of its research.
What else should you know about AbSPORU?
It is the goal of the AbSPORUPatient engagement platform to serve and connect communities across the province with researchers who are working to address what is important to them, says Santana. In Alberta, the patient engagement team recently launched an electronic platform called Albertans4HealthResearch to connect researchers and health practitioners with people and communities to work on patient- oriented research. This provincial network includes over 230 people in rural and urban areas. [ ]