Over the past several months, Albertans have heard about plans to refocus and restructure Alberta’s health-care system. In my opinion, there’s only one focus that matters: patients.
After all, who knows what matters to patients better than patients themselves.
Patient networks must be saved. In 2019, I took on a patient adviser role with the Digestive Health Strategic Clinical Network. As a patient adviser, I was involved in work that was improving health-care delivery and outcomes. My lived experience enhances my role, allowing me to better reflect the preferences, experiences and needs of patients.
Under AHS there were 10 Strategic Clinical Networks (SCN) that brought together health-care professionals, researchers, patients and community partners to improve specific health outcomes in Alberta through collaboration and innovation. The recent dissolution of these networks worries me, because the primary goal of SCNs has always been to keep patients and families at the centre of the health-care model.
Without the patient voice, my concern is that Alberta’s health-care system will become fractured, and we risk losing the voice that drives our efforts to leverage change.
Effective use of resources is critical, but not at the expense of sidelining those who matter most — patients and their families.
At this crucial juncture, where decisions are being made for us instead of with us, we need a government that truly understands what it’s doing. To ensure patient priorities are heard within Alberta’s health-care system, we must first have a broader understanding of patient participation in improving care, outcomes and experiences. A cornerstone of the Strategic Clinical Networks culture has been collaboration with patients and families.
I have seen first-hand how operational leaders at AHS harnessed the power of patient and family engagement to drive positive change and shift attitudes. In the digestive health SCN, I was a part of a team that worked diligently to eradicate tokenism in patient engagement. We addressed the power dynamics within our settings. We arrived at an understanding that progress involves establishing mutual trust. Our committee realized that by breaking down power dynamics between the system elite and patients, we foster inclusion and bring health-care decision-making out of the ivory tower.
On a personal level, being part of the committee granted gave me the gift of growth and fulfilment.
An SCN committee functions as a patient network that advances health equity and inclusion. By incorporating partnerships and co-design, SCNs promote a collaborative, cohesive approach to addressing patients’ health needs through research. An example is the Diabetes, Obesity and Nutrition SCN, which prioritizes integrating information into health-care pathways such as foot, eye and nutrition care to improve outcomes for Indigenous Peoples in Alberta. That SCN has collaborated with Indigenous communities, stakeholders, champions and elders to blend Western and Indigenous approaches.
A second example is the Maternal Newborn Child and Youth SCN, which has been providing innovative solutions to reduce variation in clinical practice and enhancing outcomes for mothers, newborns, children and youth. Since 2016, that SCN has funded 40 projects with nearly $5 million from the Health Outcomes Improvement Fund. This funding has supported various innovative projects, including virtual support for pregnant women with anxiety and depression.
As our communities’ needs evolve, we must adapt. In the past decade, Alberta’s health care has moved from siloed to integrated approaches, influenced by the patient voice. It is imperative that the patient voice receive the essential support and recognition from policymakers.
Moving forward, we must apply the tremendous knowledge of patients’ lived experiences to ensure a health-care system that truly serves all its people.
Sophia Khan is a passionate patient and community advocate, and PaCER health researcher. The Patient and Community Engagement Research (PaCER) program, based at the University of Calgary, builds capacity for patients and communities to be meaningfully and actively engaged in the health research that informs health-care planning and policy.