DESCRIPTION (provided by applicant): This research aims to create multifaceted models of how patients experience healthcare; their "journeys" grappling with disease and aspiring for health including their trajectories in and out of the healthcare system as well as the emotional, psychological, logistical and economic experiences that deeply influence those interactions. Our proposed models will allow providers and patients to gain a deeper understanding of the phases of care and treatment that underlie many health problems and chronic disease. Additionally, these healthcare journey models will enable more tailored and personalized support that anticipates barriers to effective treatment; assists patients in meeting their information, social,
economic and logistical needs; and allows healthcare providers to more effectively monitor patients and assess their wellbeing. Current health IT captures the physician's vantage point: encounters, diagnosis, treatments and the like. This research aims to capture the patient's vantage point and support their journey in and out of the healthcare system and in the context of their daily lives. This research aims to empower patients by supporting their healthcare journeys. By modeling the dynamic and complex attributes of the breast cancer journey; we will provide holistic tools designed to help patients through physical, emotional and socio-economic challenges. Our research findings may provide a greater improvement for patients in rural areas, minorities, and people of a low socioeconomic status and can demonstrate one strategy for reducing the healthcare disparities that characterize the national healthcare system. We will present a healthcare model for breast cancer that could be generalized into other healthcare contexts. Our findings should prove particularly useful for chronic diseases that need improved continuous care and where patient engagement is critical to successful health outcomes yet current tools and information for patients are insufficient. RELEVANCE (See instructions): Our research provides strategies for the broader healthcare community, and should be beneficial for patients who experience greater burdens in accessing the traditional healthcare system. Such patients include those in rural areas, minorities, and people of a low socioeconomic status. A lack of health information and resources are prevalent issues within these groups compounding the challenges experienced during the cancer journey.
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