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My journey to initiate a study for determining the prevalence/incidence of Primary Sclerosing Cholangitis (""PSC"") in different race/ethnic groups through a retrospective study in Arizona

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This paper will chronicle my personal experience in trying to design and initiate a retrospective patient data study to determine the prevalence of Primary Sclerosing Cholangitis (“PSC”) in certain races/ethnic groups in Arizona. This experience will also be the basis

This paper will chronicle my personal experience in trying to design and initiate a retrospective patient data study to determine the prevalence of Primary Sclerosing Cholangitis (“PSC”) in certain races/ethnic groups in Arizona. This experience will also be the basis for my proposed roadmap for a more successful future study.

My nearly 10 month thesis project of trying to complete a study yielded considerable ‘learning opportunities’ in large part due to my inexperience. I made numerous errors in sequencing tasks, grossly under-scoping elapsed time and hours for other tasks, completely overlooking other critical tasks, and being insensitive to how irrelevant I and my project were to the many professionals whose help I needed to complete the study. Based upon the knowledge I gained through this process, I will describe the design of a future study of retrospective patient data that will assess whether PSC patients in Phoenix, Arizona follow racial/ethnic trends. I chose Phoenix as an ideal location to perform this proposed study because of the diverse racial/ethnic population in the greater Phoenix area. The goal will be to obtain and review 20 years of retrospective patient data from three large hospital groups in Phoenix, identify the races/ethnicities of PSC patients, and quantify the prevalence and incidence of PSC in such races/ethnicities. The lack of IRB uniformity among the subject hospitals/clinics will pose a challenge, but a detailed outline of how to approach the IRB approval process and obtain PSC patient data from each institution is provided.

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2016-12

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Voces Oídas: Yuma Regional Cancer Center Hispanic Breast Cancer Patient Experiences Told Through Video Documentary

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The goal of this pilot study is to capture the lived experiences of racial/ethnic Hispanic breast cancer patients at Yuma Regional Cancer Center in Yuma, Arizona, through video documentary. This unique media gives a "voice" to patients who may otherwise

The goal of this pilot study is to capture the lived experiences of racial/ethnic Hispanic breast cancer patients at Yuma Regional Cancer Center in Yuma, Arizona, through video documentary. This unique media gives a "voice" to patients who may otherwise feel underrepresented in healthcare and in social support resources. An analysis of ten interviews with Hispanic/Latina breast cancer patients reveals the intersectional nature of social support and emotional adjustment during the breast cancer experience from diagnosis to treatment. The resulting interviews are analyzed for reoccurring themes that may resonate with a large proportion of the Hispanic breast cancer population. The final result of the pilot study is a video documentary reflecting the unique social support needs of Hispanic breast cancer patients as well as provider education needs. This video will then be broadly promoted throughout Yuma Regional Medical Center and Mayo Clinic.

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2016-12