April 3, 2019
Bonnie Sept remembers certain details about her mother’s hospital visit vividly. Her mom Erna Tabler was in intensive care recovering from surgery for a bowel
obstruction. Being in her 80s, the situation was potentially a matter of life and death.
The surgery went well. What sticks in Sept’s memory the most was how Erna’s recovery was complicated by delirium, an abrupt change in the brain that causes confusion and can affect a patient’s ability to manage their emotions.
“It was like she became a different person,” Sept says of the experience, now more than 10 years ago. “My mother would wake up confused and disoriented. It affected her mood, how she communicated and ultimately how quickly she recovered. As a caregiver, it was an emotional and difficult experience.”
Her mother eventually recovered fully, living well into her 90s. But the experience left a lasting impression and today serves as Sept’s inspiration for her work as a Patient and Caregiver Advisor at the Cumming School of Medicine’s (CSM) Department of Critical Care Medicine. Sept is among a group of paid and volunteer advisors supporting research projects, including one led by Dr. Kirsten Fiest, PhD’14, into delirium.
The study looks at delirium prevention, detection and care management. It is one of only a handful in Canada to include families of patients with delirium. The goal is to help reduce the length of a patient’s stay in the intensive care unit. In her role, Sept speaks to patients and family caregivers at the hospital about participating in the study.
“I want to help patients and loved ones have an impact that goes beyond their experience,” she says. “And the families I talk to are eager to help. They tell me they want to be more involved.” In fact, among qualified families Sept has spoken to about participating in Dr. Fiest’s study, she has had 100 percent success. “Patients and families have traditionally been the subject of research,” says Fiest. “We are increasingly working with them as meaningfully-engaged partners. It’s an important shift.”
Leaders in engaging patients and families
Engaging former patients and their families in research isn’t new but it is increasing throughout the CSM. Another unique example is the Patient and Community Engagement Research (PaCER) programme. PaCER is a collaboration between researchers in the O’Brien Institute for Public Health and Alberta Health Services. The partners have been working since 2012 on projects designed to bring patient insight into health care including research that has been co-designed with patients.
“I’m not aware of anywhere else in Canada engaging patients in research to the extent it is being done in Calgary,” says Dr. Deborah Marshall, PhD.
In 2016, the Canadian Institutes of Health Research and other partners announced funding for patient-oriented research as part of the national Strategy for Patient-Oriented Research (SPOR). Research teams co-led by CSM investigators working in chronic kidney disease and gastrointestinal diseases receive the funds over five years. Patient and family involvement was key to the funding, and people living with the diseases are active participants, such as providing questions they want scientists to answer about the disease that affects them.
Marshall leads a research program focusing on patient preferences and engagement in precision medicine. This approach allows doctors and researchers to predict more accurately which treatment and prevention strategies for a particular disease will work in which groups of people. It is in contrast to a one-size-fits all approach, in which disease treatment and prevention strategies are developed for the average person, with less consideration for the differences between individuals.
She is also co-lead of patient engagement research for a chronic disease network which involves 17 hospitals/universities and 75 researchers across Canada. The project aims to recruit 8,000 Canadians with Crohn’s disease, ulcerative colitis, irritable bowel syndrome, and healthy controls, to participate. The aim is to better understand diet-microbiome-host interactions and find new therapies for treating irritable bowel syndrome, infl ammatory bowel disease and associated psychiatric disorders.
The University of Calgary is pursuing many innovative ways to engage the public in research. The Participate in Research website (www.ucalgary.ca/research/participate) includes a searchable database with thousands of studies and hundreds of clinical trials currently seeking participants from the community.
Dr. Kirsten Fiest, PhD, is the director of Research and Innovation for the Department of Critical Care Medicine and an assistant professor in the departments of Critical Care Medicine, Community Health Sciences and Psychiatry. She is a member of the O’Brien Institute for Public Health and Hotchkiss Brain Institute.
Dr. Deborah Marshall, PhD, is the Arthur J.E. Child Chair in Rheumatology Research. She is a professor in the Department of Community Health Sciences, and a member of the O’Brien Institute of Public Health and McCaig Institute for Bone and Joint Health.
Want more input on public health?
The O’Brien Institute supports a citizen-led alliance of patients, health professionals and community members working to further citizen participation in health care. To connect with other Albertans with an interest in contributing to health care and public health, visit IMAGINE Citizens Collaborating for Health today at imaginecitizens.ca or email firstname.lastname@example.org.