At a recent Economic Club of Canada event, Scaling What Works: Advancing Healthcare Excellence Across Canada, two comments stayed with me long after discussion ended.
Stephen Samis, President of Samis Health Policy Consulting Inc., spoke about the importance of bringing people together to explore, reflect and scale what works. Jennifer Zelmer, President and CEO, Healthcare Excellence Canada, observed that while Canada does pilot projects really well, real success happens through “1,000 smart practical decisions.”
As someone living with complex chronic inflammatory illnesses, mast cell activation syndrome (MCAS) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), those observations capture one of the greatest challenges facing the Canadian siloed health-care system.
We are very good at learning.
We are very good at studying problems.
We are very good at launching pilot projects.
But when it comes to patients living with complex chronic inflammatory illnesses that don’t fit neatly within a single specialty, we struggle to translate learning into coordinated supportive systems of care.
Conditions such as MCAS, Long COVID, Lyme disease, ME/CFS, dysautonomia and other multisystem inflammatory disorders share a common challenge. Their symptoms affect multiple systems within the body; their diagnoses often require expertise from several specialties; and the science continues to evolve rapidly.
Emerging research suggests that mast cell activation syndrome (MCAS) alone may affect approximately 17–20 per cent of the population, though it remains significantly underrecognized and underdiagnosed. Researchers increasingly describe MCAS as a potential contributor to a wide range of chronic inflammatory, allergic, neurologic, autonomic, gynecologic and multisystem illnesses.
We know that chronic diseases account for a substantial proportion of healthcare utilization and spending in Canada. In 2023, almost half of Canadian adults (46.1 per cent), representing more than 14 million people, reported living with at least one chronic disease. Many live with multiple conditions requiring care from several providers over many years.
The human cost is significant, but so is the economic impact. Those costs are measured in delayed diagnoses, repeated assessments, duplicate specialist consultations, emergency department visits, declining health, lost productivity and employment, caregiver burden, diminished quality of life and growing pressure on an already strained health-care system.
Yet our health-care system remains largely organized around individual organs, siloed specialty structures and individual episodes of care. Chronic inflammatory illnesses often present with long lists of symptoms, yet patients are expected to distill their experience into a single “chief complaint” during an appointment that may last 15 minutes or less.
The result is a health-care experience that can feel fragmented, exhausting and unnecessarily difficult.
Patients are left trying to navigate between allergists, internists, gastroenterologists, cardiologists, neurologists, rheumatologists, psychiatrists and primary care providers, often without a coordinated roadmap.
In effect, patients become the care coordinators.
This is not a criticism of individual clinicians. Most providers are working within a system that was never designed to manage complex, multisystem inflammatory conditions that cross traditional specialty boundaries.
The challenge is structural.
Care pathways are not only a patient experience issue. They also are a workforce issue. Primary physicians and specialists cannot reasonably be expected to individually master every emerging chronic inflammatory condition. Well-designed pathways would help clinicians navigate uncertainty and connect patients to appropriate expertise more efficiently.
Canada has demonstrated that it can build coordinated care pathways when it chooses to. Stroke care and cancer care programs offer examples of how multidisciplinary teams, standardized pathways, patient education and coordinated follow-up can improve outcomes while reducing fragmentation. Many dementia and multiple sclerosis programs similarly provide integrated care, navigation support and coordinated communication between providers.
Patients living with complex chronic inflammatory illnesses deserve the same level of coordination. The goal is not necessarily to build a new specialty or a dedicated clinic in every community. It is to create clear referral pathways, access to multidisciplinary expertise, shared care plans and systems that help providers work together around the patient.
Meanwhile, scientific understanding continues to evolve. Long COVID has accelerated conversations about chronic inflammation, immune dysregulation, autonomic dysfunction and post-viral illness. Emerging research in mast cell disorders, neuroinflammation and multisystem disease is reshaping how some experts understand these conditions.
Yet health-care systems are often slower to adapt than the science itself.
This is where Zelmer’s observation about “1,000 smart practical decisions” becomes especially relevant.
Patients do not necessarily need a revolutionary breakthrough tomorrow.
They need practical improvements.
They need primary care providers who know where to refer their patients.
They need consistent diagnostic approaches that support their treatment plans.
They need coordinated care plans.
They need better knowledge translation.
They need access to multidisciplinary expertise.
They need continuity of care.
Technology also offers opportunities. Digital tools already can help patients track symptoms, flares, triggers, medications and quality of life in real-time, creating a more complete picture of disease activity between appointments. Patient-reported outcomes, remote monitoring and integrating data into electronic medical records are increasingly being used in other areas of health care to support coordinated care. Artificial intelligence and clinical decision-support tools may further help identify patterns, support earlier recognition of complex conditions, facilitate communication between providers and reduce the burden on patients to repeatedly tell their story. The challenge is no longer whether the technology exists or is feasible. It is implementation. It is whether we are willing to integrate these tools into care pathways in ways that improve coordination, continuity, and patient outcomes.
Most importantly, they need systems designed around how these illnesses actually present rather than how healthcare happens to be organized.
Recently, Governor General Louise Arbour observed that “Extreme polarization is dangerous – but so is extreme consensus.”
Health care rightly values evidence, caution and consensus-building. Those principles protect patients and support high-quality care. But there is also a risk in waiting indefinitely for perfect certainty before acting.
For patients, the consequences of inaction are not theoretical.
We already know enough to start.
We know that multidisciplinary care improves coordination.
We know that knowledge sharing improves outcomes.
We know that clear referral pathways reduce delays.
We know that patients should not be responsible for connecting fragmented systems on their own.
The question is not whether we know enough to act. The question is whether we are willing to bring people together, ask what is working and make the thousand practical decisions required to build something better for patients living with complex chronic inflammatory diseases.
