When Patients Must Navigate the System Themselves

Following the transition from specialist care to primary care, a structural gap emerges in both the recognition and coordination of ongoing health needs.[1] As discussed in the transition phase, patients frequently move across multiple levels of care, including specialist services, general practice, and hospital settings, without clear continuity. These transitions represent critical points at which care coordination may break down. Patients discharged from specialist care often lack structured follow-up and experience limited communication between providers, which can result in patients feeling “lost in transition” (Pimentel-Parra et al., 2025). Although policy responses such as shared care models and integrated primary care systems have been proposed to address these challenges (Smith et al., 2017; OECD, 2025), care remains fragmented in practice. Fragmented care, defined as non-continuous and poorly coordinated care across providers, is associated with increased hospitalizations, emergency visits, and healthcare costs (Joo et al., 2023).

In addition to organizational fragmentation, this gap also reflects limitations in how patient experiences are recognized within healthcare systems.[2] When symptoms are complex, subjective, or difficult to measure, they are less likely to be prioritized in clinical decision-making. This dynamic can be understood through the concept of epistemic injustice, in which patients are disadvantaged in their capacity as knowers of their own condition (Fricker, 2007). Testimonial injustice occurs when patients’ accounts are given reduced credibility, particularly when they do not align with established biomedical frameworks, while hermeneutical injustice arises when there are insufficient conceptual resources to interpret and communicate certain forms of suffering.

In response to these structural and epistemic gaps, patients actively engage in practices to navigate and compensate for limitations within the healthcare system. This can be conceptualized as bricolage, referring to the ways in which individuals assemble and mobilize available resources to manage their condition under constrained circumstances. These practices vary in form and intensity. Some patients follow formal care pathways without modification, while others engage in within-system strategies, such as consulting multiple general practitioners or emphasizing symptoms to secure referrals. Additional strategies include combining formal care with informal resources, such as online information or peer networks, seeking alternative care pathways outside the formal system, or, in some cases, disengaging from care altogether due to lack of access or resources.

Importantly, these forms of bricolage are not evenly distributed. Patients with greater knowledge, social support, or financial resources are more able to navigate or supplement the healthcare system, while those with fewer resources may be constrained in their options. As a result, bricolage may both mitigate and reproduce inequalities in access to care. These dynamics indicate that the gap in primary care is not solely a matter of service provision, but reflects deeper structural and epistemic limitations in how care is organized and delivered. When patient experiences remain insufficiently recognized and care coordination is fragmented, responsibility for managing illness increasingly shifts to patients themselves, shaping how they continue to live with chronic conditions beyond treatment.[3] 

This pattern is also reflected in our empirical findings, where participants reported navigating the system through multiple strategies, including repeated GP visits, seeking information from online sources, and relying on peer networks to interpret symptoms and access care.

Reference

Fricker, M. (2007). Epistemic injustice: Power and the ethics of knowing. Oxford University Press.

Joo, J. Y., Hwang, S., & Liu, M. F. (2023). Fragmented care and its association with healthcare utilization and outcomes: A systematic review. International Journal of Environmental Research and Public Health, 20(3), 1989. https://doi.org/10.3390/ijerph20031989

Organisation for Economic Co-operation and Development (OECD). (2025). Does healthcare deliver? Results from the Patient-Reported Indicator Surveys (PaRIS). OECD Publishing. https://doi.org/10.1787/c8af05a5-en

Smith, S. M., Wallace, E., O’Dowd, T., & Fortin, M. (2017). Interventions for improving outcomes in patients with multimorbidity in primary care and community settings. Cochrane Database of Systematic Reviews, 3, CD006560. https://doi.org/10.1002/14651858.CD006560.pub3

Love, M., Debay, M., Hudley, A. C., Sorsby, T., Lucero, L., Miller, S., Sampath, S., Amini, A., Raz, D., Kim, J., Pathak, R., Chen, Y., Kaiser, A., Melstrom, K., Fakih, M., & Sun, V. (2022). Cancer survivors, oncology, and primary care perspectives on survivorship care: An integrative review. Journal of Primary Care & Community Health, 13, 21501319221105248. https://doi.org/10.1177/21501319221105248

Phillimore, J., Brand, T., Bradby, H., & Padilla, B. (2019).Healthcare bricolage in Europe’s superdiverse neighbourhoods: A mixed methods study. BMC Public Health, 19, 1325. https://doi.org/10.1186/s12889-019-7709-x

[1] see Post 3: Transition

[2] see Post 1: Diagnosis

[3] see Post 5: Living After Cancer