Medically-defined risk and the engagement of patients in health services: a multi-level perspective

Identifying and communicating a disease diagnosis has historically been the center of the medical encounter. Recent advances in molecular biology and genetics have increased the amount of care devoted to disease screening and risk assessment. In this era of prevention, risk itself has become a ‘problem’ requiring intervention where once such problems were left unidentified. Treating risk as a diagnosis itself allows it be treated in a familiar manner, but marginalizes the patient experience. It is important to understand how adopting a biomedical view of risk and prevention influences participation in care and patient willingness to engage with the medical system, despite a lack of manifest disease. This is a critical gap in knowledge at a time when there is increased emphasis on preventive medicine. This dissertation contains three chapters that seek to characterize how identifying, labeling, and developing interventions for patients 'at risk' affects service provision and use. Study 1, Explanatory Models of Risk: The Role of Social Context in Breast Cancer Risk Perception and Decision-Making, sought to characterize explanatory models of risk among women at risk for developing breast cancer. Qualitative interviews demonstrated the importance of perceptions of risk and control in combination with elements of explanatory models and social context in their decision-making. Study 2, Associations between Breast Cancer Risk and General Health Service Use, considered the possibility that patterns of health service utilization may change following a medical finding that is often perceived as increased risk. Results showed a greater increase in the rate of outpatient visits and referrals in the year following a false positive mammogram, suggesting such utilization is driven by both patients and providers. Study 3, An Assessment of Patient Navigator Activities in Breast Cancer Patient Navigation Programs Using a Nine-Principle Framework, described similarities and differences in the execution of patient navigation programs designed to increase engagement in care among individuals who have been labeled as ‘at risk’ upon having an abnormal mammogram. Activities conducted by navigators where shown to vary according to the local context and population of women that they served