Researchers receive $3M CIHR grant to conduct trials co-designed with patients

Randomized clinical trials are widely considered the most robust form of evidence when it comes to medical research. The ultimate goal is designing trials that advance science and address issues important to patients. It requires clinicians and scientists to include patient advisers in the process.

Researchers within the Libin Cardiovascular Institute at the University of Calgary’s Cumming School of Medicine (CSM) received a $3 million grant from the Canadian Institutes for Health Research (CIHR) to conduct three innovative, patient-oriented trials — science that can inform health care and medical practices while addressing issues that matter to people living with chronic illness. These trials use clinical registries, existing surveys and electronic health record systems to recruit patients and collect data more efficiently than traditional randomized trials.

• Photo above: Researcher Matt James, left, and patient Winnie Pearson.

“We worked with patients to identify research projects that are practical and address the concerns they have about improving their quality of life, and interactions with the health-care system,” says Dr. Matthew James, MD, PhD, a kidney doctor, associate professor at the CSM and one of the lead researchers. “Our findings will be relevant to patients and the health-care community.”

Over the next four years, the team plans to test health innovations and interventions that aim to improve care, safety and outcomes for people with three common and closely related chronic diseases: heart disease, diabetes and kidney disease. These studies will focus on: the way patients' symptoms and experiences are recorded, communicated and acted upon during doctors’ visits, and whether these changes improve patient outcomes and experiences; the impact of using electronic health record systems on patients’ experiences and outcomes in various settings across Alberta; and, strategies using pharmacists to improve safety in using common medications during times of illness.

Winnie Pearson has been a cardiac patient for 30 years and is a trained patient-researcher and patient-adviser within the province’s Strategic Clinical Networks and the Libin Institute. She believes patients like herself can help researchers and physicians improve Alberta’s health-care system.

“Involving patients in choosing what to research and how to research means we learn how to correct mistakes and do things better than we did before,” she says.

Patient experiences can reveal a lot, both good and bad.

At age 73, Pearson registered at UCalgary to gain the education required to help design scientific studies. She says being involved in this work has been rewarding, especially in recent years, when patient-oriented research has taken off.

“I am very, very pleased and honoured that I am able to be part of this research,” she says.

The researchers are part of the Interdisciplinary Chronic Disease Collaboration, a multi-discipline, multi-site team made up of health-care leaders, researchers, patients and care providers who have united to address key challenges in chronic disease care.

Matthew James is an associate professor in the departments of Medicine and Community Health Sciences. He is also a member of the O’Brien Institute of Public Health.

Read details on the related studies here and here.