Attentiveness as a Methodological Approach for Including Community Partners in Qualitative Health Data Analysis

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 paper, we demonstrate that such incentivizing may result in an exercise where minimal inclusion requirements are sought to expedite the research process while proper methods for community inclusion in qualitative health research are limited. 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 parts of the research process such as data analysis and interpretation. We argue that this is unethical as it undervalues community participation and serves to reify oppressive power structures that community-based participatory research (CBPR) strives to move away from. In this paper, we draw from feminist ethics and science and technology studies (STS) of care 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 researchers within CBPR normative grounding to support their methodological practice. Second, we describe attentiveness and demonstrate how inclusion within 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

CBPR data analysis qualitative health research meaningful inclusion health justice

The landscape of qualitative health research has changed significantly with the emergence of novel ways to engage and collaborate with research participants (Duggleby & Williams, 2016; Faltermaier, 1997). Historically considered as passive knowledge objects of health research, research subjects increasingly take active roles as knowledge producers (Clavering & McLaughlin, 2010; Lerner, 2007). Community engagement (CE) and community-based participatory research (CBPR) are two methodological approaches that reposition participants as active collaborators with well-defined research roles (Wilson et al., 2018). Specifically, in qualitative health research, community collaborators (hereafter partners) help define the research problem, guide academics toward research questions, and suggest ways to disseminate results from a research study. The United States’ (US) National Institutes of Health (NIH) have further incentivized this welcome change by requiring community involvement as a criterion in certain federal funding applications (NIH Launches Community-Led Research Program to Advance Health Equity, 2023). Researchers in the global South, for example in India, engage with their respective federal funding agencies, such as the Indian Council of Medical Research (ICMR) and the Department of Science and Technology (DST), to gain funding for participatory health research by often writing in community involvement within their grant proposals as there are no specific guidelines for CBPR research within their calls for funding (Nyamathi et al., 2010). Additionally, researchers in the global South also collaborate with international funding agencies such as the NIH, the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), and private philanthropic organizations such as the Bill & Melinda Gates Foundation to design qualitative health research that centers community-based research practices (Kumar et al., 2023). Although individual CBPR research projects include local communities which can make research geographically specific, researchers across the globe recognize the potential of CBPR and have actively taken up the method in their research practice (Wallerstein et al., 2008). Ever since, community partners have held positions on research advisory boards, reviewed qualitative study instruments such as interview guides, become recruiters of study participants, and shaped qualitative research outcomes such as policy documents and manifestos.

However, inclusion requirements set out by funding institutions are minimal and may result in tokenistic practices. Researchers often unethically cherry-pick steps where inclusion is convenient, such as assisting in identifying the research question, recruitment, or dissemination (Alcantara et al., 2015; Wilson et al., 2018). Partners remain excluded from more technical research steps such as qualitative data analysis and interpretation. We argue that being attentive to partner inclusion, an approach based in feminist science and technology studies (STS) of care and feminist care ethics, should be adopted in qualitative data analysis to ensure meaningful and just data analysis. We define attentiveness as an analytic that modifies relationships between researchers and community partners in ways that foreground community expertise and lived experience within all steps of research to produce transformative health justice. Scholars have provided ethical justifications to support community engagement as a method (Pratt & De Vries, 2018), but have not highlighted the extent to which community participation is needed within different research steps such as data analysis. Others have sought to promote behavioral strategies that support equitable and trusting partnerships (Matthew, 2017); this includes many behaviors intended to increase community member comfort so that partners do not feel “used or researched.” Although researchers may use many behaviors suggested by Matthews, some participants still feel exploited or marginalized as behavioral strategies are contingent on different cultural contexts (Buchanan et al., 2007). Ethical justifications for community inclusion in qualitative data analysis have important implications for extant qualitative methods, authorship practices, and questions concerning knowledge production, compensation, and labor. Furthermore, our intent to advance a normative stance on including community partners in qualitative health data analysis stems from a lack of specific empirical evidence of community involvement in data analysis within CBPR and CE scholarship (Gillard et al., 2012).

This essay seeks to foreground an ethical obligation for community inclusion in data analysis and is structured into five sections. In the first section, we provide an overview of partner inclusion in research, focusing on the history of research ethics. This section describes how funding requirements for inclusion may lead to tokenistic forms of community engagement where researchers are less likely to ensure meaningful integration of partners. Second, we highlight two ethical rationales for community inclusion in qualitative data analysis: meaningful inclusion and epistemic justice. Third, we introduce the analytic of attentiveness, drawing from feminist Science and Technology Studies (STS) approaches to care and feminist care ethics to reconsider inclusion through a different lens. Community inclusion conceived through attentiveness enables novel forms of partner integration in research steps often foreclosed on the grounds of academic expertise. While we focus on qualitative data analysis in this essay, we foresee attentiveness as meaningfully translatable across every step of community-based research. In the final section, we discuss the material limitations of our approach and suggest further research that could open up new avenues for methodological innovations. This essay uses normative bioethics scholarship to foreground its epistemic claims and provide philosophical justifications. The authors of this essay are bioethicists who have experience designing and conducting qualitative health research internationally. While the philosophical grounding of this essay draws primarily from Western bioethical frameworks, its arguments are situated in the pragmatic design of including community partners during data analysis and are contextually translatable.

Inclusion in Research

Inclusion as Negotiations

The incidence of scandalous exploitation of human subjects, often from vulnerable populations, and consequent patient activism have given rise to regulatory protections and practices that researchers are expected to comply with when studying such populations (Epstein, 2003; Reverby, 2012). These involve increased IRB review scrutiny, additional consent or assent processes, increased risk minimization, and third-party oversight (Stark, 2012). To avoid being encumbered or having their research processes hindered by additional requirements, many researchers chose to exclude the same vulnerable populations from participating in research altogether. Such mediated forms of exclusion sought to adversely impact prison populations, children, pregnant women, and other underrepresented minoritized groups (Welch et al., 2015). In response, during the 1980s, social movements pointed to the lack of inclusion as reducing the opportunity to access research as participants (Mastroianni & Kahn, 1999). In 1994, the Revitalization Act (PL103-43) required the NIH to include Women and Minoritized population in clinical research making inclusion a legal requirement and subsequently updating policy many times. Inclusion policy requires researchers to describe the study sample composition in terms of sex, gender, race, and ethnicity. Composition must be justified (ethically and scientifically) and plans for recruitment and retention must be submitted (NIH, 2024).

Qualitative research done using participant observation, interviews and focus groups (among others) has historically engaged with diverse populations (although sometimes exploitatively) (Nelson, 1996) . However, the problem with inclusion in qualitative forms of research is not as simple as diverse engagement. Several critiques of anthropology, sociology, and empirical ethics emphasize the lack of inclusion as diversity in knowledges and knowledge-making (Whitehead, 2012). The western academic observing or interviewing vulnerable populations and non-Western communities characterizes their “objects of study” as alien to Western modes of thought and living. As a consequence, elaborations of such populations in academic journals often describe them as “primitive,” lacking in knowledge and morality (Clifford & Marcus, 2010; Stocking, 2001). Although present-day qualitative studies are often more mindful of characterizing the communities they work with in oppressive ways, it is nonetheless easy to spot qualitative studies that rely heavily on oppressive assumptions. The dearth of qualitative studies and methods that engage neurodiverse populations remains a key example where current qualitative methods fall short of capturing multiple neurodiversities (Lewis et al., 2024). This occurs since most qualitative tools are heavily predicated on the ability to hold an oral conversation in a linear manner, thereby not accounting for the multiplicities within disability and neurodiversity (Beail & Williams, 2014). Inclusion in qualitative research is then a question of who makes certain kinds of knowledge and how such knowledges are mobilized for or against the populations engaged.

What is more interesting is the collapsing of health research and qualitative research paradigms into “qualitative health research,” the main object of critique in this essay. Qualitative health research, straddles the tensepositivist rigor within biomedicine and partial positionalities within qualitative modes of study, operating at multiple levels. Firstly, objectivity and universalizability remain central to defining the right kind of knowledge in health sciences (Baronov, 2008). Secondly, qualitative research is orthogonal to objectivity and holds subjectivity, positionality, and reflexivity as rich markers of knowledge-making (Berger, 2015). Therefore, inclusion in qualitative health research is caught up between these epistemic commitments. While these commitments may seem to occupy specific research paradigms, this is not the case. Steven Epstein (1995) describes how clinical trial standards for HIV antiretrovirals were reworked to account for people of color living with HIV. Scientists conducting these trials emphasized values of “reliable” and “translatable” as important in clinical trials. However, such measures could only be obtained from people living with HIV who could adhere to treatment (who had the privilege to adhere, often white gay men). HIV activists of color protested these limiting measures by defining an “on the ground” or “in reality” expertise that was far different from the sanitized and ordered clinical trials. They argued that if clinical trials for the drug are to be effective, they must account for the complexities of HIV vulnerability (often racial, class, gendered, and sexed). Gradually, HIV activists of color were included in the drug trials by introducing measures closer to the materialities of the epidemic, essentially reworking clinical trial standards. HIV activists were also invited to spaces that were often occupied by scientists, thereby providing them with larger political stakes in biomedical research.

Through this example, it is clear how material lived realities can be fashioned into forms of expertise by communities to promote inclusion. Inclusion can then be framed as negotiations between biomedical objectivity, qualitative epistemes of knowledge-making, and leveraging cultural and regional forms of expertise. Inclusion is not as simple as including more diverse samples; instead, it is a layered, relationally complex, network of negotiations between scientists, local communities, scientific standards, ethicists, material health outcomes, and health justice. Inclusion thus changes from an ideal that can be achieved through regulatory and federal mandates to one that is followed and constituted through methodological practices. When inclusion is redefined as a practice that is enacted through several forms of negotiations, mandates become limiting in ensuring meaningful and just inclusion. In this essay, we conceive inclusion as negotiations that occur between community partners, academics, grant funding requirements, health outcomes, IRBs, and several other actors involved in the study. Consequently, we argue that the analytic of attentiveness, calls attention to these negotiations and modifies relationships between researchers and community partners in ways that foreground community expertise and lived experience within all steps of research to produce transformative biomedical research that undergirds health justice generating an epistemology for meaningful and just inclusion.

Inclusion Through CBPR

While the notion and intent of inclusion are laudable, its realization through funding mechanisms has serious shortcomings. Researchers are bought into a “science of inclusion,” a procedural approach void of ethical reflection where certain market-based techniques are used to maximize recruitment and retention (Epstein, 2008). Although inclusion of diverse populations has been an ethical requirement in research, its realization as a practice has often featured either through strict inclusion criteria or representation of population-based diversity. This creates a form of “passive inclusion,” where researchers simply strive to meet minimal funding requirements but are inattentive to why or how different groups may wish to participate in research (Lee et al., 1997). Attempts to include community members through minimal requirements often lack attentiveness to context, knowledge production, specificity, and ethics. Regulatory and procedural approaches to the inclusion of vulnerable populations and underrepresented groups overlap with inclusion in qualitative health research. Specifically, funding agencies might highlight the minimum requirements (e.g., inclusion of a community partner or patient representative) but there is insufficient consideration regarding how this can be done in a meaningful manner. As a result, relationships with community partners may well start without due regard for or understanding of critical determinants respecting who participants are and how they can and will engage in research.

While the number of journal articles and scholars who engage in CBPR have increased (Julian McFarlane et al., 2022), much of community involvement in health research is relegated to problem-setting at the outset of the research study and result dissemination after the study is completed. Although there exist examples of effective responsibility-sharing in the scholarly literature (Brush et al., 2020), it remains doubtful whether community partners are actively involved in most steps of the study (Cashman et al., 2008). Although funding agencies and research institutions have promoted community engagement, the amount of time, training, and funding that they allocate to the process remains insufficient (Mason et al., 2013). This contributes to a more superficial and tokenistic involvement where the community might well be excluded from more lengthy and seemingly technical tasks such as data analysis.

Rationales for Community Partners in Qualitative Analysis and Interpretation

As it stands, involving community partners during data analysis simply reads as a “good idea” or a “good practice” and not an ethical imperative in community-based qualitative health research. While methodologies aspire towards normative ideals such as “best practices,” they are also closely entangled and shape by these ideals. Methodologies are laid out through pre-determined normative standards, whether they be objectivity or reflexivity (Yanow, 2015). Encounters with communities and constraints in methodological practice also shape normative ideals, redefining research standards and values in complex ways (McCracken, 2020). Health research in general, including qualitative work, is increasingly moralized through novel biomedical interventions and accounts of personal responsibility (Rose, 2007). As CBPR is normatively committed to centering community perspectives on health/illness, it becomes important to describe how normative reasoning informs qualitative methodological practice. As mentioned in the previous section, much of CBPR is also about who gets to produce what knowledge and how they are mobilized, both of which are fundamentally normative. Therefore, the inclusion of community partners in data analysis must be grounded within normative rationales, which makes methodological practice a site of ethical analysis and practice.

Ethically requiring academics to include community partners in data analysis will lead to a transformative practices of CBPR. The ethical obligation to involve community partners in data analysis stems from two rationales. First, while communities possess important epistemic goods, community inclusion for the mere possession of such goods negates meaningful inclusion by reconfiguring them as objects of study. Second, since CBPR holds health justice as one central outcome, it is only fair that epistemic justice should also guide CBPR. After using these rationales to justify community involvement in data analysis, we describe the analytic of attentive inclusion to rethink inclusion as a practice of negotiations rather than ensured through mere regulatory standards. While these rationales apply to CBPR in general, we make our argument for CBPR as linked to qualitative health research.

Community Involvement in Data Analysis Leads to Meaningful Inclusion

Scholars in research ethics discuss inclusion of diverse populations not only as representation but also within epistemic research practices where communities actively contribute to knowledge-making (Anderson, 2020; Friesen et al., 2023). Theoretically, community partners who are often the sites or objects of research are also engaged throughout the research process including defining the research problem, developing research methodologies, providing recruitment guidance, data analysis, and disseminating results to academics and communities (Cargo & Mercer, 2008; Wallerstein et al., 2020).

While such inclusive practices are ideal and certainly more expansive, most research projects selectively include partners for certain convenient and discrete tasks (Chávez et al., 2008). Typically, in many studies, community members are often sought for niche research questions, access to research participants, and as spokespersons for endorsing research and dissemination of results (Banks et al., 2013; Shore, 2006; Sismondo, 2010). This may reduce commitments within CBPR to utilitarian goals of collecting diverse research questions that yield increased publications and more funding (Lachance et al., 2022). Furthermore, with academic journals mandating community involvement in research practice and funding schemes requiring the same, researchers have resorted to cherry-picking community involvement as they see fit (Benson et al., 2024; Wallerstein, 2017). Furthermore, reasons for excluding community partners from data analysis are often attributed to the technical nature of analysis and worries about feasibility and research integrity (Jagosh et al., 2012). More specifically, the technical nature of analysis would require significant methodological training that is outside the scope of community interest. Moreover, without technical training, the rigor of the analysis might be questionable which leads to research integrity concerns.

Relegating community members to providing insights into specific parts of a study seriously undermines the motive behind CBPR and what it means to truly include community partners in research. Exploiting community involvement narrowly to meet researcher needs is not meaningful inclusion but tokenistic or convenient. If community-based participatory research aims to “establish structures for participation by communities affected by the issue being studied, representatives of organizations, and researchers in all [emphasis ours] aspects of the research process to improve health and well-being through taking action, including social change,” then, there should be procedures set up to ensure the same (Viswanathan et al., 2004, p. 3).

Why is cherry-picking community involvement in research tokenistic? Involving community partners in defining the research problem, result dissemination, and even data analysis, is based on epistemic valuing (Howe, 1997). It underscores the idea that community engagement is preferred because community partners possess special kinds of knowledges that have great value in shaping the research being conducted. While this is true, a close examination of this sentiment reveals a problematic assumption. Such epistemic valuing holds that the basis for community inclusion is the mere possession of special epistemic goods. Grounding community inclusion for mere epistemic value reinforces community members as the “objects” of study. Meaningful inclusion repositions inclusion as driven by a Kantian philosophy instead of a utilitarian inclusion that only values epistemic goods. That is, inclusion should occur regardless of the possession of any kind of expertise. Harvey Siegel (1995, p. 4) rightly notes:

There is no necessary connection between inclusion and epistemic worthiness or exclusion and epistemic defectiveness. Rather, inclusion is a moral virtue, and should be valued as such. People and groups deserve inclusion not because of any special epistemic privilege they enjoy, nor because including them necessarily increases the probability of obtaining true or justified theories

While this argument might seem to pose a double-bind for community inclusion, this is not the case. We do not deny the fact that inclusion has utilitarian benefits. For example, studies have demonstrated how CBPR can be used to address challenging community-specific health disparities, increase external validity, etc. (Green & Mercer, 2001; McElfish et al., 2018). However, this view considers meaningful inclusion as beneficial in and of itself regardless of its utilitarian or pragmatic outcomes. Justifications for community inclusion found solely within community expertise would lead to further forms of stratification where community partners may be filtered based on their education status, their ability to close-read transcripts, and understand qualitative methodologies easily. This forecloses novel forms of community engagement in analysis that do not rely on restrictive academic markers of value but instead involve story-telling, Indigenous forms of song and dance, and collage-making for visually rich qualitative studies (Huang et al., 2024). Furthermore, community inclusion simply for their unique knowledge objectifies them in ways that are extractive especially when research output ends with benefits for researchers (more publications and funding) and falls short of advancing justice for the engaged community.

Including Community Partners in Data Analysis Enacts Epistemic Justice

Community-based health research holds health justice as one of its central outcomes (Cacari-Stone et al., 2014; Wallerstein & Duran, 2010). By engaging community members as vital partners in research practice, their visions of justice become embedded within the goals of research (Cacari-Stone et al., 2014). Concerns around racial, economic, gender, and disability justice are increasingly central analytics to understanding and reducing health inequities (Devia et al., 2017; Norwood et al., 2022). And thus, excluding community partners from data analysis leads to epistemic injustice. Several scholars have laid out rich accounts of epistemic injustice (Anderson, 2012; Fricker, 1999, 2012). While Fricker’s original account of epistemic injustice draws out the two ways in which it manifests (testimonial injustice and hermeneutical injustice), in a later essay Fricker (2012, p. 1318) claims “the category of epistemic injustice should be considered an umbrella concept, open to new ideas about quite which phenomena should, and should not, come under its protection.” We proceed with Fricker’s openness to epistemic injustice and demonstrate its relevance to the meaning-making process within qualitative research.

Since qualitative data analysis is a meaning-making process, it is easy to interpret data in ways that may not reflect community values (Paulus et al., 2010). Researchers familiarize themselves with the transcript data (an excerpt of community lived experience) and structure them in ways that make sense to the research problem at hand. Essentially, researchers engage in meaning-making where community concerns are juxtaposed with the extant world to identify existing fault lines that obstruct justice or increase disparities. When research scholars who do not share community lived experience are the sole analyzers of qualitative data, there is a good chance that the analysis may skew towards the researcher’s situated view of reality. Similar to Fricker’s notion of testimonial justice, the researcher might have a prejudice against the community partner’s social identity, resulting in partners being treated as lacking epistemic agency. Although such biases are likely subconscious, their analysis and interpretation might simply not embrace the same worldview.

Fricker also develops the idea of hermeneutic injustice; a type of structural discrimination that renders the individual intelligible to their social experience. Academic researchers might not recognize how academia as an institution labels certain kinds of knowledge as legible and credible within research while eschewing community lived experience as equally credible. For CBPR that involves constructivist or interpretive qualitative research, the explicit intent to advance community visions of justice must prioritize community engagement in meaning-making, structured in ways the community would like them to be.

Results of qualitative health research and its dissemination have significant material implications as they highlight the impact of discrimination and injustices on communities (Dukes & Kahn, 2017). The specific ways in which qualitative data are structured can impact how future research and policy interventions are planned and implemented for the communities engaged in research (Arzubiaga et al., 2008). Research that mobilize intersectional accounts of health are a prime example of how qualitative research can shape material outcomes. By describing health and healthcare access as tightly wound up with the categories of race, class, gender, and ability, interventions aimed at promoting health are now measured through indicators that expand across the above categories and their co-constitutive influences (Abrams et al., 2020). When community partners are excluded from data analysis, they are also excluded from meaningfully producing accounts of how their material conditions (housing, employment, insurance, etc.) influence their health and diseased states. As a consequence, they lose out on being able to carve out their health needs and demand support from public health systems and state/federal policymaking institutions. While the implications of material conditions on community health may come through regardless of community inclusion in data analysis, the stakes are different. It is one thing when researchers write up the health needs of the community and another when community partners can structure it themselves in the analysis. When community partners are included in this structuring, they hold more political ground within academic institutions, thereby configuring themselves into spaces that are not often accessible. By changing the relational power dynamic between partners and researchers, inclusion is characterized as negotiations. Thus, inclusion becomes a methodological practice that grants greater political stakes around inclusion and knowledge production.

Not including community partners in data analysis can also be read as appropriation of knowledge leading to epistemic injustice. Qualitative data are essentially community experiences. Researchers who self-determine themselves as the only people who possess the expertise to analyze data pose two drawbacks. First, it detaches community lived experience from community cultures and contexts generating an analysis that lacks complexity in interpretation. Conversely, community partners possess cultural, contextual, social, and environmental knowledge that enables their lived experience to be adequately “situated” (Wynne, 1996). Second, it allows researchers to “own” and author community lived experience in ways that separate experience and knowledge thus reinforcing undesirable power dynamics. While scholars have theorized literal ownership of data (in the form of tissues and cell lines) and whiteness in handling research data (Reardon & TallBear, 2012), the appropriation we describe is much more figurative. Here, community knowledge is the object of (wrongful) ownership. Authorship in an academic journal symbolically transfers knowledge rights from the community to researchers especially when community partners are not on the author list. This problem is further stratified since the kind of expertise and engagement that warrants authorship positions are often set around academic terms that are not open to diverse community practices (Sarna-Wojcicki et al., 2017). Harboring an ideology where scholars are seen as the only people fit to analyze qualitative data is a type of epistemic injustice where knowledge-making is appropriated by academic spaces even if the data being analyzed are excerpts of community experience.

Attentive Inclusion as an Epistemological/Methodological Approach

Now that we have explored the philosophical rationales for community inclusion in data analysis, we describe attentive inclusion as a methodological approach when situated in practice, can potentially lead to community-driven knowledge-making. Attentiveness as an analytic has been used by scholars in both feminist care ethics and feminist STS to denote practices that have been excluded from and under-appreciated in dominant ideologies that shape health and its accompanying politics (Bourgault & Robinson, 2020; Lindén & Lydahl, 2021). Here, we describe 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.

Within feminist care ethics, attentiveness features significantly among nursing and end of life ethics (Gastmans, 1999). In her essay “An Ethic of Care,” Joan Tronto (1998) lays out four dimensions of care, distilling the ethical attitudes that underly each dimension. Tronto’s first dimension, “caring about,” considers paying close attention to the worries that contextualize care (Gastmans, 2013) and involves stepping out of one’s “comfort zone” to understand the patient. Tronto identifies attentiveness as the ethical attitude that underlies this practice, a skill that recognizes all the contours of the patient, often erased by dominant biomedical accounts of health. While attentiveness has been employed in ways that go beyond developing a particular kind of nursing (caring) skill (Hartmann, 2024; Klaver & Baart, 2011; Vosman & Nortvedt, 2020), the major takeaway from accounts of attentiveness in feminist care ethics is the reconfiguration of care from a normative ideal into a care that is constituted and enacted through practice. This is similar to participatory epistemologies that move away from elitist and often oppressive knowledge-making criteria, into a knowledge-making that is produced by attending to the material realities of community partners, recognizing their role and expertise in informing research. Feminist ethics of dementia care speak about how caring should not be restricted to the end goals of health and well-being but must be a part of everyday acts of bathing, feeding, and clothing the patient which are seen as mundane and insignificant (Råholm, 2012; Siniora et al., 2022). Care made legible through everyday acts speaks back to the normative ideals set up by systems of biomedicine.

Attentiveness thus entails developing a close, compassionate relationship with people, especially with those whose voices and bodies are frequently erased or marginalized. Being attentive necessitates understanding the particularities of contexts and circumstances that influence people’s lives, going beyond cursory symptomatic observations to a deeper understanding of their lived experience. Attentiveness as a practice actively seeks to comprehend and address care needs in a compassionate and context-sensitive way, in addition to simply being present during care (Maeckelberghe, 2004). In doing so, attentiveness helps to uncover and address the systemic inequalities and injustices that often shape people’s care needs. It also requires a reflexivity stance, where a continuous examination of varied positionalities cultivates a more inclusive and just approach to providing care. In practical terms, attentiveness manifests through everyday interactions, such as actively listening to someone’s concerns, validating and platforming their experiences during care provision, or in larger systemic attempts, designing health policies and practices based in the material realities of the most vulnerable (Peterson, 2012).

Within feminist STS, attentiveness and care are taken together as ethico-political concerns (Liboiron, 2016). While feminist STS and feminist care ethics share broader commitments to care provision, an STS lens differs in its ability to make visible the various actors (human and non-human) that gather around and are involved in providing care. Such a gathering breaks away from reductive clinician-patient dichotomies and broadens care as impacted by the ability of various technologies to “measure” disease, the role of testimonial documents in ensuring healthcare access, and the ecologies of patient communities in society. Puig de la Bellacasa’s contributions within STS of care are insightful. For Puig De La Bellacasa (2010), an STS approach to care restructures traditional care paradigms (clinician providing patient care), expanding its scope to include larger socio-technical systems in addition to interpersonal relationships. Care thus becomes an attentive, continuous process that entails preserving, mending, and maintaining the world we live in. In this expanse, being attentive necessitates a sophisticated understanding of the complex and frequently obscured relationships that exist between people, technology, and the environment. For CBPR, this might include recognizing the limitations of community partners in data analysis as created by a lack of data analysis tools, academia’s illegibility to the community, research commitments that take time away from community priorities, and structural injustices that impact the community’s health states. Bellacasa advocates for an ethics that is attentive to the particulars of each case, arguing that care in STS necessitates recognizing the situated, material, and affective dimensions of these connections (De La Bellacasa, 2012). Put simply, it involves attending to “who will do the work of care, how to do it, and for whom” (De La Bellacasa, 2011, p. 91).

In feminist STS of care, being attentive involves developing communal care practices that sustain interdependencies within socio-technical networks and not relying entirely on accounts of individualistic moral responsibility (Murphy, 2015). It demands a close examination of scientific, technological, and allied research practices that influence and are influenced by larger social and ecological forces. Attentiveness thus becomes a form of ethical, political, and practical engagement, requiring a commitment to fostering more equitable and sustainable ways of living and working together by incorporating community partners into qualitative research (Hackfort & Saave, 2024). It also emphasizes the importance of staying attuned to the labors that sustain technological systems and infrastructures (De La Bellacasa, 2011; Mol et al., 2010) . Accounting for labors performed by both communities and academics engaged in CBPR brings generative and dissipative forms of engaging with research institutions to the fore. As De La Bellacasa (2011, p. 94) rightfully points out, “generating care means counting in participants and issues who have not managed or are not likely to succeed in articulating their concerns, or whose modes of articulation indicate a politics that is ‘imperceptible’ within prevalent ways of understanding.”

How do these frameworks of care aid in the synthesis of attentive inclusion in qualitative CBPR research? Attentive inclusion, drawn from feminist care ethics and feminist STS, requires reconceptualizing inclusion beyond mere compliance with federal mandates to embracing it as a dynamic, open-ended practice that gathers several community partners whose relationalities matter as much in generating a comprehensive method for its application. Amidst increased calls for inclusive research, well-intentioned federal mandates, grant funding requirements, and IRBs who characterize inclusion as effected through categories, work within constraints that are less open to building transformative inclusion practices. Attentiveness transforms inclusion into a practice of negotiations between researchers, federal mandates, scientific standards, community partners, IRBs, and material health outcomes thus broadening the scope of what is at stake for health justice. Rather than fulfilling regulatory checklists, attentive inclusion demands that inclusion itself become a participatory process that does not foreclose any form of community engagement but instead leverages community expertise to negotiate inclusion criteria set by regulatory systems and academic practice. Within CBPR, this might look like forging relationships with community partners by redefining categories of expertise in ways that recognize structural injustice but at the same time do not limit them from actively shaping research and the knowledge produced from it. This necessitates actively seeking out and valuing situated knowledges of various communities, recognizing them as vital knowledge producers throughout the research process rather than passive subjects who are part of the research (Filipe et al., 2017; Jasanoff, 2007; Jasanoff & Kim, 2013). For CBPR, this implies finding ways to bring community partners onto the research team to undertake data analysis.

For academics, this entails continuous reflexivity, critically examining their positionality within academia, their expertise as crafted by specific academic practices of exclusion, and their mandate to conform to restrictive academic standards to remain legible. In practice, this means developing inclusion criteria and practice through elaborate community engagement that recognizes the multiple subjectivities community members may occupy. Additionally, this necessitates shaping inclusion criteria that are open to bringing community partners to be involved in data analysis. For example, while race as a category might automatically signal academics toward the many oppressive schemas that work to limit the community, black motherhood as a subjectivity produces specific forms of knowledge where black mothers can actively shape research around maternal mortality and pain (Craddock, 2015).

Attentive inclusion is an ongoing commitment to adapting and evolving research practices based on continuous dialogue, negotiation, and feedback from community partners. It recognizes that inclusion is not a one-time achievement but a perpetual process of reshaping research criteria and practice upon learning from community expertise. Ultimately, attentive inclusion moves beyond strictly defined criteria and makes room for partners to shape research practice in ways they see fit. This section advances attentive inclusion as a method where complexities of community inclusion in data analysis are highlighted and adapted but do not preclude opportunities for community data analysis. Using the concept of attentiveness to the practice of inclusion leaves it open and adaptable to the contexts of the research study and participants.

Attentive Qualitative Data Analysis in Health Research Practice

In this section, we describe how attentiveness in data analysis reconfigures community partner inclusion in data analysis and adds more depth to the process. After qualitative health data is collected, transcripts of participant conv serve as precursors for data analysis which may be done through a variety of methods like Foucauldian Discourse Analysis, Thick Description, Reflexive Thematic Analysis, and Grounded Theory Analysis among others (Braun & Clarke, 2019; Clarke, 2003; Liamputtong, 2009). In practice, coding, a component of data analysis, is an iterative process where tags or labels are “clipped” onto transcript excerpts in ways that help structure and organize the data at hand. During coding, qualitative data is interpreted and organized in ways that generate patterns of meaning. This is where epistemic reflexivity can figure prominently. The researcher critically reflects on their beliefs, assumptions, intersectionality, and actions to better understand the possibilities this might open up or close off during knowledge production (Gough, 2017; Ruby, 1980). The notion of epistemic reflexivity underpins the “situatedness” (Haraway, 1988) of the researcher. Situatedness speaks to the academic traditions researchers are immersed in, their social positioning, their political commitments and how they reflect in the way qualitative data is interpreted and organized.

While coding does require methodological expertise to ensure rigor and integrity, researchers can analyze data in collaboration with community partners who can provide rich interpretations of the lived experiences in a situated manner to structure the data at hand. It is their lived experience that is probed both ontologically and epistemologically to obtain “raw data” for analysis (Peck & Mummery, 2018). Admittedly, there have been some cases of highly collaborative data analysis practices in CBPR health research that have included dynamics that prioritize community knowledges. For example, a study on the role of permanent supporting housing programs for people living with HIV conducted by Burgess et al. (2023) used an interactive “sticky note” process in a large team modality to prioritize partner views. Another qualitative study on factors influencing young mothers’ breastfeeding practices conducted by Chopel et al. (2019) completed the iterative qualitative analysis process with a committee that included a young mother as a partner.

Additionally, methods such as photovoice, digital storytelling, First Nations co-design, and collaborations with lived experience expert researchers offer critical pathways for engaging community partners in qualitative research. Photovoice encourages participants from marginalized communities to document their lived experiences through pictures, generating a collaborative analysis of images that challenge conventional hierarchies of research expertise, amplifying participant voices in shaping research narratives (Nykiforuk et al., 2011). Digital storytelling similarly emphasizes participant expertise, combining personal narratives with multimedia elements such as photographs, videos, and audio recordings to create emotionally resonant and culturally specific accounts of community experience (Davey & Benjaminsen, 2021). These methodologies not only tap into the affective and relational dimensions excluded from traditional qualitative research but also serve as tools for decolonizing methodologies (Archibald et al., 2019) and social transformation. First Nations co-design methodologies, grounded in a decolonial praxis, center Indigenous epistemologies to ensure that research questions, designs, and outcomes are collaboratively developed with Indigenous communities (Shea et al., 2013). These approaches emphasize relationality, accountability, and reciprocity to actively challenge the colonial underpinnings of conventional research practice. Together, these methodologies exemplify feminist and decolonial commitments to redistributing power and challenging extractive and hierarchical modes of knowledge production.

Although such methods are being increasingly taken up within qualitative health research, this paper emphasizes that a change in epistemic and qualitative data analysis practice is crucial to meaningfully include community partners during data analysis. Photovoice, digital storytelling, and First Nations co-design meaningfully include community partners during research but can still leave them out of the data analysis phase. Through meaningful inclusion and epistemic justice, this essay foregrounds an ethical imperative for qualitative health researchers to include community partners during data analysis while embracing community partners as co-designers of health research.

Limitations and Discussions

This section will discuss limitations of this normative paper and the pragmatic aspects of including community partners in data analysis. To advance attentive inclusion as more than a normative ideal, scholars must critically examine material and institutional constraints that shape its enactment in research practice (Janes, 2016). While attentiveness foregrounds inclusion as an ongoing and relational process, its implementation remains entangled with bureaucratic demands of funding agencies, IRBs, and academic institutions that often require fixed and measurable inclusion criteria (Lake & Wendland, 2018). Without empirical engagement with how researchers negotiate these tensions, there is a risk that attentive inclusion remains an aspirational ethical stance rather than a viable methodological approach. Further inquiry is needed to understand how CBPR researchers navigate the constraints of institutional timelines, deliverables, and hierarchies of expertise while attempting to remain accountable to community partners. Such an analysis would make the friction between regulatory imperatives and the open-ended, situated ethics of participatory knowledge-making visible.

At the same time, operationalizing attentive inclusion requires a methodological reckoning with the challenges of participatory research itself. While feminist STS critiques extractive and hierarchical research practices, participatory approaches are not inherently emancipatory; they, too, can reinscribe power asymmetries, limit whose voices are heard, and marginalize forms of expertise that do not fit within dominant epistemic frames (Leurs, 2017). Attentive inclusion calls for ongoing negotiation, but what does that negotiation look like in practice, particularly when institutional and community priorities do not align? Participatory methodologies must attend to these tensions by studying how researchers and community partners contest, redefine, and co-produce inclusion in ways that do not foreclose dissent or reify inclusion as a fixed endpoint. Ethnographic studies of participatory research processes, including moments of rupture, failure, and revision, would be critical in illuminating the labor involved in sustaining genuinely collaborative research relationships (Cornwall & Jewkes, 1995; Hogger et al., 2023).

Moreover, institutional structures that shape research ethics and funding need to be interrogated through a lens that foregrounds the socio-material conditions under which inclusion operates. IRBs, grant agencies, and policy-makers often rely on categorical inclusion metrics that flatten the complexities of participatory research (Sandoval et al., 2012). How might institutional review processes be reimagined to accommodate an ethic of attentiveness rather than demand rigid compliance? Interviews with funding bodies, ethics boards, and university administrators could provide insight into how institutional policies constrain or enable alternative approaches to inclusion. Additionally, feminist STS scholarship on bureaucracy, governance, and accountability (Doezema & Frahm, 2023) could inform strategies for institutionalizing attentive inclusion in ways that do not reduce it to another regulatory checkbox but rather cultivate structures that support ongoing, responsive engagement.

Beyond institutional constraints, further research must examine how different forms of participatory research enact attentiveness and to what effect. Comparative case studies of CBPR projects that attempt to embed attentiveness within their research design could reveal the conditions that make such approaches viable or, conversely, the points at which they break down (Wallerstein et al., 2019). Do projects that center community expertise as a methodological principle produce different forms of knowledge than those adhering strictly to regulatory inclusion criteria? What infrastructural, financial, and temporal resources are necessary to sustain attentiveness in research practice? By empirically mapping the material conditions that enable or foreclose attentive inclusion, scholars can provide a grounded critique of inclusion as a procedural mandate and offer concrete pathways for reconfiguring research ethics.

Ultimately, moving attentive inclusion from a normative ideal to an actionable methodology requires scholars to engage deeply with the messiness of participatory research in practice (Podar, 2024). This means interrogating the material-discursive entanglements that shape inclusion, from policy infrastructures to everyday research encounters. It also means resisting the tendency to romanticize participation and instead documenting the frictions, contradictions, and negotiations that arise in efforts to center community expertise. Attentive inclusion, as a methodological commitment, must remain open to revision and not as an abstract principle but as an ongoing practice of adapting research infrastructures, redistributing epistemic authority, and fostering accountability beyond institutional mandates. Through empirical inquiry and methodological innovation, CBPR scholars can push beyond critiques of inclusion as a regulatory mechanism toward a more generative reimagining of how research is done, for whom, and with what ethical commitments.

The limitations of a normative essay in addressing material specificities only go so far. There are several pragmatic limitations to embedding attentiveness within qualitative health data analysis. The first pragmatic limitation arises in handling and sharing qualitative data and setting up a common space for shared coding. Contemporary modes of data analysis happen through software such as ATLAS.ti and NVivo where multiple analyzers can work on the same set of data together (Woods et al., 2016). This allows community partners with access to computers to engage in data analysis, but this is contingent on technology access and the number of licensures available for using such software. Notably, the analysis expertise that community partners may or may not possess is raised as a relevant concern. We would argue that not all coders need to utilize this type of software. Attentiveness requires us to modify traditional research protocols to consider the technological means of partners. This might include developing a codebook on paper or designing novel hybrid workspaces where academics bring in community partners to analyze data together. Additionally, researchers can write extra computers and coding software licenses into their grant budgets.

The second pragmatic limitation involves time commitment (Tariq et al., 2023). Research scholars are committed more fully and directly to the research study in ways that community partners are not. A research study may not supersede other community priorities and accordingly, it might not receive the same time commitment as that of researchers. However, the ethical obligation to include community partners is not reduced by partner ability or the likelihood that community partners can refuse (Benjamin, 2016; Kafer, 2021; Ruti, 2017). This also holds respecting informed consent, where refusal is part of the consent process. While the ethical obligation falls on researchers to extend invites to participate, this does not guarantee participation. Moreover, academics can involve community partners in less time-intensive ways or devise a schedule by consulting with community partners to figure out dedicated analysis times. Such community involvement can also be supported by employing community partners through specific grant fundings that demonstrate the value of community expertise and rightly compensate them for the labor performed.

A third and allied pragmatic limitation that arises is that of compensation. While community participants are compensated for their time during an interview or a focus group discussion, compensation for data analysis is a different consideration. Data analysis takes much more time than interviews or focus groups. There may also be other modes of compensation and recognition beyond simply monetary. Authorship may be considered for community partners for roles in data analysis (Castleden et al., 2010; Fursova, 2023; Sarna-Wojcicki et al., 2017; Smith et al., 2019). However, extending authorship as a form of compensation to community partners is debatable since academia still remains as a restricted space for knowledge-making (Brim, 2020). More importantly, authorship is more valuable to a researcher since it provides more academic capital that is related to increased funding and career advancement. This capital might not be as valuable to a community partner unless academic structures reconfigure expertise in a community-affirming manner.

Conclusion

In this essay, we demonstrated how inclusion, as mandated by federal regulations and funding criteria, falls short of commitments to inclusion as espoused by CBPR. Inclusion, when enacted this way is limiting and often ends up with researchers cherry-picking limited research tasks that are convenient for community partners to complete. By doing so, researchers meet the lower thresholds set by funding agencies but exclude community partners in meaningful work like data analysis and interpretation. Since qualitative methods and normative ideals are closely wound up, we explained how community inclusion in data analysis requires substantive ethical justification for it to be considered as an obligation rather than just “good practice.” We justify community inclusion in data analysis through two ethical rationales; meaningful inclusion and epistemic justice. We argued that reshaping qualitative methods in alignment with the conception of inclusion as negotiations requires attentiveness. Inspired by STS approaches to care and feminist care ethics, attentiveness changes the relationship between researchers and community members to align with the commitments of inclusion and health justice as endorsed by CBPR. Lastly, we demonstrated what attentive inclusion in qualitative data analysis might look like by providing a hypothetical example of community involvement in coding.

Attentiveness also has broader implications for qualitative health research beyond data analysis. Using attentiveness as a methodological approach for many steps of CBPR research would require a critical reevaluation of inclusion practices that would benefit community-driven knowledge-making and advancing health justice. More specifically, attentiveness provides a robust foundation for reimagining research practices to prioritize community voices, address systemic inequalities, and foster more equitable and sustainable approaches to health research and qualitative research practice.

Looking ahead, several key recommendations can further enhance the application of attentive inclusion in qualitative health research within CBPR. First, researchers must reconceptualize inclusion as a dynamic and participatory process, rather than viewing inclusion as a regulatory requirement or a checkbox exercise. Researchers should engage in meaningful negotiations with community partners, regulatory systems, and academic practices to co-create inclusive research frameworks that reflect the diverse expertise and perspectives of all stakeholders involved. Second, researchers and academic institutions need to embrace a reflexive stance, critically examining their positionalities, biases, and privileges within the research process and academia broadly conceived. By acknowledging and addressing the power dynamics inherent in academia, researchers can cultivate more inclusive and just research environments that prioritize community expertise and knowledge production. Third, researchers can use attentiveness in research to help dismantle discriminatory structures that obscure communities from the working of the scholarly enterprise. This includes leveraging the cultural insights and practices of community partners to broaden the scope of existing tools in qualitative health research. By recognizing the interconnectedness of knowledge-making, its impact on community health outcomes, and the importance of community labor in sustaining research infrastructures, researchers can develop qualitative methods that meaningfully account for community involvement. In sum, attentiveness offers a transformative framework for qualitative health research that centers community voices, challenges existing power dynamics, and fosters more inclusive and just research practices.

Footnotes

Acknowledgments

The authors express their gratitude to the faculty and scholarly body at the Institute for Bioethics and Health Humanities (IBHH), The University of Texas Medical Branch, Galveston for their invaluable feedback on earlier versions of this manuscript. The authors also express their gratitude to community partner engagements in their scholarly careers as setting the basis for this normative essay.

ORCID iDs

Vishnu Subrahmanyam

Elise Smith

Statements and Declarations

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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