Research & Inquiry

My research examines the epistemological gap between what is clinically documented and what is actually lived.

In oncology, some of the experiences that most profoundly shape quality of life are difficult to capture through conventional clinical measures alone. Symptoms are often isolated, measured, and treated as discrete variables, while patients experience them as interconnected changes in cognition, embodiment, identity, relationships, and daily functioning.

My work focuses on these margins: what is well represented in the empirical evidence, what remains poorly named or under-theorized, and what becomes visible when clinical knowledge is intentionally placed in conversation with lived experience.

Framework  |  Evidence  | Current Research  |  Core Questions  |  Emerging Inquiry

01 – FRAMEWORK

Conceptual & Methodological Orientation

My inquiry sits at the intersection of medical humanities, phenomenology of illness, epistemic justice, psycho-oncology, and qualitative health research.

Central to this work is the distinction between disease as clinically defined pathology and illness as the subjective and embodied experience of living with that pathology.

That distinction creates an important site of inquiry: the space between what medicine can identify, categorize, and measure and what a person actually has to navigate within their body, relationships, identity, and everyday life.

Key Conceptual frameworks

  • Recognizing empirical clinical data and experiential knowledge as distinct, complementary forms of evidence that can illuminate different dimensions of illness.

  • Examining what happens when patients lack adequate shared language or interpretive frameworks for making sense of and communicating aspects of their experience.

  • Considering how differences in credibility and authority can shape whether patients' accounts of their own bodies and experiences are heard, believed, or incorporated into care.

  • Extending the study of lived and embodied experience to examine how structural conditions, institutional practices, clinical environments, and social power shape the experience of illness itself.

02 – EVIDENCE

  • Establishes what has been studied, how phenomena have been defined, and what current evidence demonstrates.

  • Show how patient experiences are translated into standardized measures of symptoms, functioning, and quality of life.

  • Includes qualitative studies, memoirs, first-person essays, patient-advocate writing, blogs, interviews, and other illness narratives that provide access to how people describe and make meaning of their experiences.

Evidence & Epistemology

First-person narratives are not substitutes for empirical research. They answer a different kind of question.

I draw across several forms of evidence:

Comparative analysis

What becomes visible when formal clinical evidence and lived experience are examined together?

Patient narratives may reinforce existing evidence, complicate established categories, or reveal experiences that remain inconsistently measured, insufficiently differentiated, or largely absent from the research record.

I am particularly interested in those points of divergence as signals for closer investigation.

Clinical evidence + experiential knowledge → areas of convergence and omission → new questions for research, education, and care

03 – CURRENT RESEARCH

Current Research: Endocrine Therapy & Hormone Disruption

A primary focus of my current work is the lived experience of endocrine therapy and treatment-related hormone disruption in early-stage breast cancer survivorship.

Clinical research has documented many individual treatment effects, including vasomotor symptoms, musculoskeletal pain, sexual dysfunction, fatigue, cognitive concerns, and mood changes.

My interest is in what may happen between and beneath those categories.

How do multiple physiological changes combine to alter a person's sense of embodiment, cognitive functioning, emotional experience, relationships, and self-recognition? And what happens when a patient experiences a profound change in how she feels in her body or understands herself, but the available clinical language describes only the individual symptoms?

04 – CORE QUESTIONS

Core Questions

These questions guide the current direction of my work—where existing measures may fall short, what patients are naming that clinical language does not yet fully capture, and how those gaps might inform better education, communication, and survivorship care.

  • How well do existing quality-of-life and symptom measures capture the interconnected, multisystem experience of endocrine therapy and treatment-related menopause?

  • What language do patients use when established clinical categories do not adequately describe their embodied experience?

  • What recurring patterns become visible across qualitative research and first-person narratives that may be less apparent in conventional clinical literature?

  • What do patients wish they had understood before beginning treatment, and how might that knowledge inform more meaningful pre-treatment education and shared decision-making?

  • How might a fuller understanding of these experiences improve provider communication, psychoeducation, treatment support, and survivorship care?

05 – EMERGING INQUIRY

Emerging Areas of Inquiry

A future direction of this work is the study of how illness is experienced within unequal systems of care.

Critical phenomenology offers an especially useful framework because it extends the study of lived experience beyond the individual body to examine the social, institutional, and structural conditions through which that body is interpreted, treated, believed, and supported.

I am particularly interested in the narratives of Black and African American women navigating cancer care and survivorship. This includes examining how race, gender, clinical communication, institutional practices, and structural inequities shape experiences of diagnosis, treatment, navigation, trust, and survivorship.

Potential areas of inquiry include:

  • how patients describe being heard, believed, dismissed, or required to repeatedly establish the legitimacy of their concerns within oncology settings;

  • how structural barriers shape the additional labor required to access, coordinate, and remain engaged in care;

  • how patients navigate uncertainty, medical mistrust, clinical decision-making, and relationships with healthcare institutions;

  • how caregiving roles, cultural expectations, community context, and social position shape the cancer experience;

  • and where first-person narratives reveal dimensions of care that remain underrepresented in conventional clinical outcomes, quality-of-life measures, or formal research agendas.

This work is informed by critical phenomenology and epistemic justice, which ask not only what patients experience, but how systems of power shape whose experiences are recognized, whose knowledge is granted credibility, and which forms of suffering become clinically visible and actionable.

More broadly, I am interested in how first-person narratives can illuminate the forms of knowledge that are often lost when patient experience is translated into standardized categories—and what those omissions may reveal about the design of cancer care itself.