Community Partner Inclusion in Qualitative Health Data Analysis: Feminist Ethics of Care, Attentiveness, and Health Justice

Elise Smith – Assistant Professor, Bioethics and Health Humanities, The University of Texas Medical Branch

Abstract: Health science funding agencies incentivize qualitative community-based research to promote inclusion and better address the health of historically exploited or excluded communities. However, in this presentation, we demonstrate that such incentivizing may result in an exercise where minimal inclusion requirements are sought to expedite the research process while excluding robust methods for community inclusion in qualitative health research. Researchers may choose to recruit from vulnerable populations and include community representatives in advisory capacities but exclude the same vulnerable populations from participating in less convenient and resource-intensive parts of the research process such as data analysis and interpretation. We argue that this increases harms as it undervalues community participation and implicitly supports oppressive power structures that community-based participatory research (CBPR) strives to move away from. We draw from feminist care ethics and science and technology studies to introduce “attentiveness” as an analytic that modifies the relationships between researchers and community partners within all steps of research in ways that foreground community expertise and lived experience to produce transformative biomedical research based in health justice. First, we highlight the ethical rationales for community inclusion in qualitative data analysis through meaningful inclusion and epistemic justice and provide qualitative health researchers normative grounding to support their methodological practice. Second, we describe attentiveness and demonstrate how inclusion in CBPR can be modified to generate novel ways of working with community partners during qualitative data analysis. Attentiveness thus bears significant epistemic potential in reworking longstanding qualitative research practices in CBPR that emphasize health justice.

Keywords: Qualitative Health Research, Feminist Ethics of Care, Health Justice