Healthcare systems are complex, and navigating them takes work. Finding the right provider, getting referrals, completing forms, understanding benefits, coordinating between services—these tasks constitute an administrative burden that falls on patients. For those already struggling with illness, disability, or other challenges, this burden can be overwhelming. The administrative requirements meant to organize care become barriers to receiving it.
The Hidden Labor of Being a Patient
>Being a patient isn't passive. It requires work—scheduling appointments, getting to them, filling out paperwork, communicating with providers, managing medications, coordinating between specialists, dealing with insurance and coverage issues. This labor is unpaid, often unrecognized, and assumed in system designs.
>The burden is unevenly distributed. Those with more education, resources, and capacity navigate more easily. Those with less—who are often also those with greater health needs—face disproportionate barriers. The administrative burden is a form of inequality layered on existing health inequalities.
>People with chronic conditions and complex needs face the highest burden. Multiple providers mean multiple relationships to manage. Ongoing conditions mean endless appointments, forms, and prescriptions. The labor of managing chronic illness can feel like a job—one that never ends and doesn't pay.
Forms and Documentation
>Paperwork pervades healthcare. Intake forms at every provider. Prior authorization for treatments. Disability benefit applications. Medical leave documentation. Each form takes time, requires information the patient may not have at hand, and may need to be repeated across different providers or purposes.
>Forms assume literacy, language access, and cognitive capacity that not all patients have. Complex questions, bureaucratic language, and requirements for precise information create barriers. What seems straightforward to those who designed forms may be impossible for some who must complete them.
>Documentation requirements can delay care. Prior authorization processes make patients wait while paperwork is processed. Appeals of denied coverage require time and persistence. The treatment is possible, but the path to it is blocked by administrative requirements.
Referral Processes
>Getting from one provider to another—from primary care to specialist, from hospital to community care—involves referral processes that can fail at multiple points. Referrals sent but not received. Received but not processed. Processed but never resulting in contact. Patients wait in limbo, unsure if they're in queue or lost.
>Referral navigation falls largely on patients. Following up on sent referrals. Tracking down lost paperwork. Calling to check on wait times. Patients become case managers for their own care because systems don't reliably do this work.
>Specialist access varies by referral source. Some specialists accept referrals only from physicians, not nurse practitioners. Some have relationships with particular referring providers. The ability to access specialists depends on having the right referral path, which patients may not understand.
Coordination Failures
>When care involves multiple providers, coordination between them is necessary but not automatic. Specialists may not communicate with primary care providers. Hospital discharge information may not reach community providers. Each provider sees one piece without the whole picture.
>The patient becomes the coordinator, carrying information between providers, remembering what each has said, identifying contradictions and gaps. This coordination labor requires understanding of medical information that patients may not have and cognitive capacity they may lack.
>Transitions—between hospital and community, between pediatric and adult services, between geographic areas—are high-risk coordination moments. The patient moves between systems designed differently, and information often doesn't move with them.
Insurance and Coverage Navigation
>Canada's patchwork coverage—hospital and physician services publicly insured, but drugs, dental, vision, and other services variably covered—creates navigation burden. Figuring out what's covered, by whom, under what conditions is complex work.
>Private insurance adds complexity. Different plans cover different things. Provider networks limit choices. Claim processes require documentation and follow-up. The work of extracting coverage from insurance systems falls on patients already dealing with health problems.
>Appeals of denied coverage require knowledge of procedures, persistence over time, and often advocacy support that not everyone can access. Denials that should be overturned stand when patients lack capacity to fight them.
Navigation Support
>Patient navigators help people find their way through healthcare systems. These roles exist in various forms—cancer navigation, Indigenous patient navigation, general health navigation. Navigators understand systems and help patients manage what they couldn't manage alone.
>Navigation support shouldn't be necessary—systems should be navigable without special help. But given current complexity, navigation support is essential for many patients. Expanding navigation programs helps those who need help now while system reform proceeds.
>Community health workers, peer support workers, and social workers all provide navigation assistance in different contexts. The specific title matters less than the function: someone who understands systems helping someone who doesn't.
>Technology can assist navigation—patient portals, appointment tracking, automated reminders. But technology also creates barriers for those without access or skills. Digital navigation tools work for some and exclude others.
Simplification
>The better solution is simplifying systems so navigation burden decreases. Reducing unnecessary forms. Automating information transfer. Eliminating prior authorization for routine treatments. Designing systems that work without requiring patients to make them work.
>Single-payer or simplified coverage models reduce insurance navigation burden. When coverage doesn't require navigation, the burden disappears. Universal pharmacare would eliminate the complexity of patchwork drug coverage.
>Designing from patient perspective—rather than administrative or professional perspective—would produce different systems. If designers had to navigate their own systems as patients do, they'd design differently.
Questions for Reflection
>Should healthcare systems be required to assess and minimize administrative burden on patients? What accountability would make this happen?
>How should navigation support be funded and organized? Should it be integrated into clinical services, provided separately, or both?
>What specific administrative requirements could be eliminated or simplified to reduce patient burden without losing essential functions?