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Many areas of clinical informatics research rely on accurate and complete race and ethnicity (RE) patient information, such as estimating disease risk, assessing quality and performance metrics, and identifying health disparities. Structured data in the electronic health record (EHR) is an easily accessible source for patient-level information, however RE information is often missing or inaccurate in structured EHR data. Furthermore, current federal standards on RE categories have been acknowledged as inadequate, and in need of more granular realizations. While more difficult to extract data from, clinical notes provide a rich, nuanced and subjective source of information that can be leveraged to increase granularity and/or recover RE information missing in structured data. State-of-the-art clinical natural language processing (NLP) approaches can enable researchers to extract RE information from clinical notes, however, NLP has also been shown to inherit, exacerbate, and create new biased and harmful associations, especially in modern deep learning approaches. This thesis explores the relationships between direct and indirect explicit mentions of RE and RE inferences in clinical text annotated by humans, and leverages an approach to audit deep NLP models for their learned associations. We develop gold-standard annotations for information related to RE (RE indicators) and RE labels. We leverage four RE indicators: country of origin, spoken language, direct race, and direct ethnicity mention. We find high agreement between annotators for RE label assignments, and that sentences assigned RE categories have drastically different distributions of RE indicators. Furthermore, we find high agreement between structured and unstructured sources of RE information, and that unstructured data can be used to recover missing RE information in structured data. Leveraging the gold-standard RE annotations, we train a model to label sentences with RE information and audit the model to examine the alignment between salient features and RE indicators. While our models attain good classification performance, this does not translate into high overlap with RE indicators. We find evidence for learned associations that are benign mistakes, helpful but not strictly correct, and potentially harmful mistakes if not addressed by future work.

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With the rise of vaccine preventable illness in the US, the importance of timely vaccinations in children remains a priority. Mandatory school vaccination requirements are effective because they are generally accepted by the public, they allow schools and immunization programs to share resources, and they serve as a safety net to ensure all school children are immunized appropriately regardless of race, socioeconomic status (SES), or access to medical care2. However, it has repeatedly been shown that low-income, urban minority children have higher rates of underimmunization11-13, 15,16. The city of Philadelphia has a disproportionately large number of undervaccinated students compared to the rest of the state36. Philadelphia also has the highest poverty rate in the 10 largest cities of the US, and the majority of those living in poverty are minorities37. Given that the majority of Philadelphia students attend Philadelphia public schools, and of those students, greater than 75% are minorities, the disparity follows established trends39. Understanding the beliefs, attitudes, and behaviors of guardians of students in the School District of Philadelphia regarding mandatory immunization requirements and their barriers to fulfilling mandatory requirements can help facilitate future compliance. Ultimately, this information can reduce the number of undervaccinated students in the city and bridge this gap dividing students along racial and SES lines. / Urban Bioethics

Addressing childhood trauma is increasingly being recognized as a priority in public health, healthcare and health policy sectors. As evidence mounts that the effects of trauma are both graded and dose responsive, stakeholders in healthcare are turning more attention to preventing and addressing experiences of trauma in childhood, commonly referred to as adverse childhood experiences (ACEs). Trauma Informed Care (TIC), is a promising clinical approach attuned to the specific needs of traumatized patients that is still in its infancy with regards to training and evaluation of practitioner skills. Although physicians of all specialties will encounter patients who have experienced trauma, few undergraduate medical education curriculums provide formal training in TIC. Additionally, the approach to TIC in clinical settings has largely been biomedical and individual, with a focus on screening and treatment. This model ignores the role that communities play in both propagating trauma and generating resiliency. Urban academic medical centers, often geographically located in highly traumatized communities, must take a specific interest in developing TIC research, theory and praxis that includes and empowers communities. Service learning, a form of experiential education that cultivates self-awareness in students while simultaneously meeting community objectives, is a pedagogy that aligns with a community driven TIC framework. This thesis outlines the implementation of a community driven, bi-directional TIC learning model designed to serve the needs of medical students and low income K-8th grade students living in the geographic catchment of an urban, academic medical center. / Urban Bioethics

Teenage childbearing is considered a societal ill, despite the evidence failing to demonstrate a causative link between teenage childbearing and negative consequences for teens or their children. This thesis argues that the strongly held assertion that teenage childbearing is detrimental to teens and society is rooted in racist eugenics theories and histories of reproductive coercion. Today, social scientists, health care providers, and public health professionals develop and celebrate programs that reduce rates of teen pregnancy, particularly programs that provide Long Acting Reversible Contraceptives (LARCs) to teens in marginalized communities. While these efforts are well-intentioned, they fail to recognize their perpetuation of histories of reproductive coercion of young women of color. This paper recommends ways in which the medical community can be better informed and respect reproductive autonomy in caring for teens from marginalized communities. / Urban Bioethics

In the current healthcare landscape, parents generally make decisions regarding whether or not their children are allowed to take part in clinical research, with the general assumption being that parents know what is best for children. Investigations have been conducted regarding what is likely to lead parents to consent or not consent to their child’s participation in a trial, but research plans seldom incorporate the consideration that not all parents come into the consent process with equal social, academic, and economic footing. Since the burden of the ultimate decision lies primarily on the parents, it is supremely important that they are capable of making a well-informed and thoughtful choice. Bioethical understanding of the influence of parental decisions in clinical research must consider demographic variables and how they may affect parents’ decisions to allow or disallow their child to participate in a clinical trial. Those differences could affect the consent process and have ramifications for the research findings, as research results are affected in numerous ways by which children do, and do not, participate in studies. This paper looks specifically at parents in the process of informed consent for pediatric research, taking into account several social determinants of health and how they affect who participates in research and how that affects research as a whole. / Urban Bioethics

This thesis explores the role of formal bioethics instruction in preparing medical students to face ethical issues pertinent to diverse populations in clinical practice. The importance of bioethics education has been widely recognized and as a result, it is formally required in all medical schools. However, with little standardization on the actual logistics, ethics education in medical schools is extremely variable, producing students who are naïve and/or inconsistently capable of managing ethically complex situations. During medical school I pursued a Masters of Arts in Urban Bioethics (MAUB), which heavily focused on the social determinants of health and how they manifest in health care settings. I acquired new skills that gave me perspective and awareness into ethical issues that urban populations face, and during my clerkships I found I was better equipped and more comfortable navigating my patients’ non-medical complexities than my non-MAUB peers. Using three personal patient encounters as examples, I illustrate how a comprehensive urban bioethics education can positively impact patient care. Finally, I suggest improvements to medical schools’ bioethics curricula that will likely influence and mold each student’s thought processes to be more ethically-aware and culturally-sensitive. The goal of reforming bioethics education is to give students a set of real-world skills rather than a theoretical book of knowledge. Without a comprehensive and multifaceted approach to bioethics, students will likely lack the cultural sensitivity, awareness, and perspective necessary to treat a diverse patient population. / Urban Bioethics

Though there is ample evidence in existing literature demonstrating racial inequity in end-of-life care, there is minimal examination of how the culturally mainstream values of hospice contribute to inequity and reduced access for nonwhite populations. This paper reviews participatory action research, interviews and chart reviews of nonwhite populations including African Americans, Latinx, Asians and Native Americans to determine what end-of-life values these groups report and how they differ from the values of hospice and western biomedicine. All of these groups reported unmet cultural needs with respect to hospice access ranging from differing communication style preferences to different religious beliefs to different ideas about what they dying process should look like. Contributing to these barriers was practitioner ignorance about cultural variance in end-of-life preferences, demonstrated by studies of physicians to identify barriers to effectively providing end-of-life care. To help foster better knowledge and understanding between practitioners and nonwhite patients whose cultural needs are not being met, I have created a value-assessment tool to add to the standard structure of end-of-life conversations. Using this tool with patients in end-of-life conversations could improve physician confidence in understanding the needs of patients and provide patients an opportunity to freely communicate their needs and therefore increase access to the hospice services that can meet those needs. / Urban Bioethics

Presumptive fertility is an ideology that leads us to treat not only pregnant women, but all female patients of reproductive age, with the presumption that they could be pregnant. This preoccupation with the possibility that a woman could be pregnant compels medical and social interventions that have adverse consequences on women’s lived experiences. It is important to pause now to examine this ideology. Despite our social realities -- there is a patient centered care movement in medical practice, American women are delaying and forgoing childbearing, abortion is safe and legal -- there is still a powerful medical and social process that subjugates womens’ bodies and lived experiences to their potential of being a mother. Fetoconsciousness, preoccupation with the fetus or hypothetical, not-yet-conceived, fetus privileges its potential embodiment over its mother’s reality. As a set of values that influence our beliefs, attitudes, and behaviors, the ideology of presumptive fertility is contextualized, critiqued, and challenged. / Urban Bioethics