Those who use healthcare systems understand them differently than those who design or deliver them. Patient experience reveals what works and what doesn't in ways that professional expertise alone cannot. Incorporating lived experience into system design—involving patients, families, and communities in shaping healthcare—can produce services that better meet actual needs. But moving from token consultation to genuine partnership requires shifting power that systems often resist.
The Case for Lived Experience
>People who navigate healthcare systems know their realities firsthand. They experience the waiting, the forms, the fragmentation, the dignity violations, the successes and failures. This knowledge is different from professional knowledge—not better or worse, but different and essential.
>Healthcare designed without patient input may miss what matters to patients. Professional assumptions about what's important may not match patient priorities. Processes that seem efficient from administrative perspectives may create barriers from patient perspectives. Design without user input produces systems that serve themselves rather than those they're meant to serve.
>The disability rights principle "nothing about us without us" applies to healthcare broadly. Decisions affecting people's health should involve those affected. This isn't just instrumentally valuable—it produces better outcomes—it's also a matter of respect and rights.
Levels of Involvement
>Patient involvement ranges from weak to strong. At weakest, patients are informed about decisions already made. Next, they're consulted—their input is sought but may or may not influence outcomes. Stronger involvement includes partnership—patients and professionals jointly making decisions. Strongest is patient-led—patients directing with professional support.
>Most healthcare systems operate at lower involvement levels. Patient feedback is collected; patient satisfaction is surveyed; advisory committees exist. But fundamental decisions about service design, resource allocation, and priorities remain professionally controlled.
>Moving up the involvement ladder requires sharing power that professionals and administrators currently hold. This power shift faces resistance—both practical (how do we do this?) and fundamental (who should make these decisions?).
Patient Advisory Structures
>Patient and family advisory councils bring lived experience voices into healthcare organizations. These councils advise on policies, programs, and practices. Their influence varies from genuine partnership to tokenism, depending on organizational commitment and council capacity.
>Effective advisory structures require meaningful agenda-setting by advisors, not just response to staff-determined questions. They require access to information needed for informed advice. They require feedback on how advice was used—accountability to advisors. They require resources for participation—compensation, childcare, transportation, accessible meeting formats.
>Representative challenges affect advisory structures. Those who participate may not reflect the full diversity of patients served. People with capacity and time to participate in advisory structures may differ from those who face greatest barriers to care. Intentional recruitment across demographics and experiences improves representativeness.
Co-Design and Co-Production
>Co-design involves patients as partners in designing services, not just advisors to professional designers. Patients participate throughout design processes—defining problems, generating options, making decisions—alongside professionals.
>Co-production extends this to ongoing service delivery. Patients aren't just recipients of services but active participants in producing health outcomes. Their knowledge and effort contribute alongside professional services. This reconception of healthcare relationships moves beyond provider-delivers/patient-receives models.
>These approaches require different skills than traditional healthcare delivery. Facilitating genuine collaboration, working with non-professionals as equals, and sharing control all require capabilities that professional training doesn't always develop.
Peer Involvement
>Peer workers—people with lived experience of conditions similar to those they support—bring experiential knowledge directly into care delivery. Mental health peer specialists, addiction recovery coaches, and patient navigators with relevant lived experience all provide forms of care that professionals without lived experience cannot.
>Peer involvement in system design extends this principle from direct care to planning and governance. People who've experienced mental health systems advising on mental health policy. People who've been homeless informing housing-health integration. The specific experience relevant to the design challenge should shape who's involved.
Indigenous Health Governance
>Indigenous communities have particular claims to involvement in health services affecting their members. Self-determination means Indigenous control over Indigenous health. This exceeds advisory roles—it means governance and decision-making authority.
>Transfer of health services to Indigenous control is ongoing in Canada, at different stages in different communities. First Nations Health Authority in British Columbia provides a developed example of Indigenous health governance. Other arrangements exist elsewhere, though federal and provincial systems still deliver much Indigenous health service.
>Indigenous governance of Indigenous health isn't just about including Indigenous voices in mainstream systems—it's about Indigenous systems controlled by Indigenous nations.
Barriers to Involvement
>Power dynamics impede genuine involvement. Healthcare is professionally dominated; non-professional voices challenging professional authority face resistance. Even when involvement is sought, professional perspectives may be privileged over patient perspectives.
>Resources for involvement are often inadequate. Patient advisors may volunteer while professionals are paid. Meetings may be scheduled at times convenient for staff but not patients. Materials may be professionally written without accessibility consideration. Under-resourcing involvement limits its quality.
>Tokenism—involvement that gives appearance without substance—discourages participation. When patients contribute and nothing changes, when their input is sought after decisions are made, when involvement is performed without commitment—people learn that participation is pointless.
Meaningful Involvement
>Creating meaningful involvement requires commitment at leadership level. When senior leaders demonstrate that patient perspectives matter—not just rhetorically but through changed decisions—organizational culture shifts.
>Structures must enable rather than constrain involvement. Clear terms of reference, authority to influence decisions, feedback loops on impact, and integration with decision-making processes all matter.
>Capacity building helps both patients and professionals participate effectively. Patients may need orientation to healthcare systems, processes, and language. Professionals may need skills for collaboration and power-sharing they weren't trained for.
Questions for Reflection
>Should patients have decision-making authority—not just advisory roles—in healthcare system design? In what areas is patient authority appropriate?
>How can involvement structures ensure representation of marginalized patients whose voices are often missing? What would genuinely inclusive involvement look like?
>What should happen when patient perspectives conflict with professional judgment? How should these tensions be resolved?