Improving Clinical Research to Inform Advocacy Initiatives with Underserved Individuals

Introduction

Advocacy is defined by Webster’s Dictionary as “the act or process of supporting a cause or proposal” (Merriam Webster, 2020). Health advocacy has been defined as “activities related to ensuring access to care, navigating the system, mobilizing resources, addressing health inequities, influencing health policy and creating system change” (Hubinette, Dobson, Scott, & Sherbino, 2017, p. 128). A substantial amount of clinical research has focused on addressing inequities to reduce disparities and improve quality of healthcare among underserved individuals, consistent with both definitions of advocacy. Therefore, in many cases, particularly when research is aimed at improving the health and wellbeing of underserved people, it can be considered a form of advocacy, or at least be thought of as informing and contributing to advocacy efforts.

However, to effectively advocate for underserved individuals, researchers and providers, including clinical psychologist researchers, must involve members of the populations with whom they work to accurately identify critical problems facing their communities, identify effective strategies to address those problems, and to accurately interpret the results of the clinical assessments used in research. Problematically, the collaborative aspect of advocacy has not always been followed in clinical research. Healthcare settings have unknowingly contributed to minority stress for members of marginalized communities due to stigma and discrimination in both clinical and research contexts (Gessner, Bishop, Martos, Wilson, & Russell, 2019; Gomez, 2013; Lambda Legal, 2014; National Coalition of Anti-Violence Programs, 2017). The historical legacy of minority healthcare consumers being mistreated and underserved in medical and research settings has exacerbated existing structural barriers to healthcare access resulting in poor engagement in care for many that must be addressed to improve the health and well-being of underserved communities and to foster advocacy (Marmot, 2005; Rivenbark & Ichou, 2020). In the present paper we briefly describe ways underserved individuals have been marginalized in healthcare and research settings, and discuss how these settings can implement collaborative, inclusive practices aimed at alleviating chronic and systemic stressors of underserved populations through advocacy.

Addressing Health Inequities: Underserved Populations’ Experiences in Healthcare and Research Settings

Marginalized and underserved people have consistently faced structural or systemic inequity and discrimination, which may be particularly felt by those with intersecting stigmatized identities (Robinson & Ross, 2013). For example, African American or Black sexual minority men are substantially more likely to acquire HIV and face barriers in accessing or initiating pre-exposure prophylaxis (PrEP medication) compared to white sexual minority men (Batchelder et al., 2017). These disparities are related to layers of socioecological inequalities rooted in systemic racism (Hanks, Solomon, & Weller, 2018), homonegativity (negative attitudes toward sexual minority individuals), and stigma related to HIV/AIDS.

For some clinical researchers and providers, understanding the history behind underserved populations’ interactions in healthcare and research settings may require additional effort and education. Without an understanding of minority stress (King et al., 2008; Meyer, 2003), health disparities outcomes and minority health engagement and adherence may not make sense. An understanding of the current and historical stressors and inequities experienced in healthcare and research settings is needed for researchers to appreciate what is needed to develop, refine, and implement effective interventions for underserved people.

Relatedly, quality of provider education on minority health topics directly impacts the availability of competent, culturally sensitive care. This education has been notably lacking in many medical educational settings (Denboba, Bragdon, Epstein, Garthright, & McCann Goldman, 2013; Gamble Blakey & Treharne, 2019; Like, 2011) despite its absence having deleterious consequences for quality of care as well as health engagement outcomes (Awosogba et al., 2010; McGuire & Miranda, 2008). Additionally, providers’ perceptions of their competence related to one component of an underserved individual’s identity may not be sufficient for effectively treating a person with interlocking underserved and stigmatized identities. For example, White et al. (2015) found that while providers may feel competent discussing HIV prevention with their patients, they may not feel prepared or comfortable with topics related to gender identity, which is problematic given increased risk for HIV in patients who identify as transgender or gender diverse. While topics related to minority health have not been routinely included in medical or mental health curricula (Beach et al., 2004; van Ryan, 2004), recent efforts seek to address this gap (e.g., Boroughs, Bedoya, & Safren, 2015; Truong, Paradies, & Priest, 2014). Despite these efforts, inconsistencies in trainings focused on effectively addressing underserved population health raises concern about sufficient assessment competency, as some providers may feel uncomfortable inquiring about minority-health topics (Moll et al., 2014; White et al., 2015). Further, the lack of comfort and training addressing these topics can result in important topics not being brought up or inquired about awkwardly or unfamiliarly, leaving patients feeling stigmatized. Systematic efforts are needed to implement training to ensure competence and comfort among providers and clinical researchers working with underserved individuals, including those with interlocking stigmatized identities.

In addition to incompetent care and care settings marked by systemic inequities, underserved individuals may also experience discrimination or violence during treatment. For example, one underserved population disproportionately impacted by mistreatment in healthcare settings are transgender and gender diverse (“TGD”) individuals. Guiding our knowledge of these outcomes, the 2015 United States Transgender Survey (USTS; 2015) revealed that a high rate of TGD respondents endorsed mistreatment and discrimination in healthcare settings. Specifically, one-third of TGD individuals surveyed in USTS reported having a negative experience in a healthcare setting, including experiences of verbal harassment, physical, or sexual assault in the past year. Of those sampled, individuals who identified as racial minorities or as disabled reported higher rates of negative health care experiences compared to those without these interlocking identities, evidencing the need to be aware of interlocking stigmatized identities when considering chance of experiencing discrimination. Underserved individuals who experience discrimination, including gender minority individuals, may avoid healthcare settings altogether due to fear of mistreatment (National Transgender Discrimination Survey, 2010; USTS, 2015), perpetuating continued expectations of stigma and invalidation within care settings (Sloan, Berke, & Shipherd, 2017). This population exemplifies a stark look at direct experiences of violence that may lead to a negative association with healthcare settings, which can be extrapolated to other marginalized and underserved populations, as many underserved patients carry mistrust of the very medical system intended to serve them. In order to reduce medical and research mistrust, efforts are needed to prevent discrimination in healthcare and clinical research settings and implement trauma informed care practices.

Medical and research mistrust are common barriers to producing research that informs and supports advocacy efforts. Marginalized underserved communities, particularly people of color, have long faced exploitation and discrimination in the context of medical treatment and research (e.g., Tuskegee; Darcell et al., 2010). Evidence indicates that many African American healthcare consumers remain aware of past violations of rights in the Tuskegee Syphilis Study, yielding a demonstrable negative effect on attitudes toward medical care (Freimuth, Quinn, Thomas, Cole, Zook, & Duncan, 2001). Further, lack of trust in research is an influential barrier to participation in research (Brown et al 2014; George et al., 2014; Limkakeng et al., 2014; Schmotzer, 2012). In addition to the historical context, insufficient provider training resulting in culturally incompetent or even discriminatory behaviors continue to perpetuate medical and research mistrust and, thereby, perpetuate inequities in healthcare more broadly.

Relatedly, the concept of cultural mistrust, the adaptive attitudinal stance in which a person of color is suspicious or guarded toward a white person (Terrell & Terrell, 1981), may influence the acceptance of medical and psychiatric diagnoses and psychological interventions (Whaley, 2001). For example, the messages patients tell themselves about potential side effects and medical treatments, informed by the historical context of exploitative experiments and procedures, can reduce treatment engagement and adherence. Myers, Ball, Jeffers, and Lawson (2018) examined urban, African American women and found that age, uncertainty (measured via the Need for Closure Scale), and conspiracy beliefs predicted medical mistrust towards HIV treatment. The study authors acknowledge that conspiracy beliefs have been a strong historical predictor of medical mistrust, and also have a protective and social role, permitting the passage of information as it pertains to protecting a minority group. Thus, clinical interventionists are challenged to develop and implement effective strategies to address the impact of limited inclusion of underserved individuals who may not be trusting of medical systems. In pivoting to a collaborative model (discussed in the following paragraphs), informed by an understanding of minority stress and the historical context of exploitation, insufficient training related to working with underserved individuals, and continued discrimination, providers have opportunity to strategically improve the quality of care and health and mental health outcomes through collaborations with community members.

Discussion/Specific Practice Recommendations: Improving Access to Care and Navigating the Healthcare System

While there are challenges related to merging advocacy and psychological research, including potentially competing goals and outcomes as well as differing conceptualizations of how to achieve psychological well-being, there are several strategies that may be useful. Community-based participatory research (CBPR), as described by Israel (2003) and others (e.g., Collins et al., 2018; Unertl et al., 2016) emphasizes a methodology based on a lateral, partnered approach in which both partners are egalitarian. Its methodology focuses on equitably counting all partners’ expertise (community members, academic researchers, and other stakeholder team members) into decision making, resulting in shared ownership of the project. CBPR has been described as a way to increase the odds an intervention is effective by ensuring underserved community partners are empowered to voice their perspectives and contribute throughout the research process (Wallerstein & Duran, 2010). By involving members of an underserved community in every stage of the research, including identification of critical questions, the development of intervention strategies to be tested, as well as interpretation of results, research can best identify areas in need of advocacy and, ultimately, identify effective intervention strategies. As many challenges faced by underserved individuals are influenced and exacerbated by socio-political historical contexts, systemic inequity, and socio-ecological layers of bias and discrimination, the research questions identified by members of underserved communities often indicate areas of needed advocacy that are often underappreciated from the ivory tower (e.g., Chung et al., 2008; Willyard, Scudellari, & Nordling, 2018). Further, by equitably fostering lateral collaborations between members of an underserved community and researchers, as well as other key stakeholders, questions that may isolate the underlying challenges, or root causes, of problems as well as effective solutions can be identified, tested, and accurately interpreted. For problems that are rooted in historical discrimination, economic inequity, and systematic oppression, these collaborations can result in the identification of community and research-based advocacy strategies. The end goal may be ensuring access to care, navigating research or medical settings, mobilizing resources, which are ultimately needed to improve the psychological and physical health of underserved individuals, consistent with Hubinette’s definition of health advocacy (Hubinette et al., 2017).

However, effectively implementing CBPR is difficult, time-consuming, and often expensive, which precludes its use in many contexts. Therefore, when conducting full CBPR is not possible, we propose that clinical researchers consider using components of this strategy, often referred to as community-informed strategies. These practices can be thoughtfully and systematically implemented in a range of research methodologies, with the goal of involving empowered community members at various stages across the research process. While the strategies we describe do not strictly adhere to CBPR methodologies, we suggest infusing these strategies into more traditional research methods, including intervention design and testing.

One example of using community informed strategies is exemplified through Batchelder et al. (2015) and Batchelder et al.’s (2013) studies. Batchelder developed a psychological intervention strategy to reduce internalized stigma and shame among people living with HIV and substance use disorders based on previously conducted qualitative and quantitative analyses which solicited open-ended feedback from individuals living with HIV and substance use disorders about the root causes of sub-optimal engagement in HIV self-care behaviors. Through this work, community members identified internalized stigma and shame as psychological barriers to engagement in HIV self-care. Batchelder then iteratively developed an intervention to improve HIV self-care behaviors (Batchelder et al., 2020) based on additional qualitative interviews with individuals living with HIV and substance use disorders and providers who work with this population, such as infectious disease and addiction medicine physicians, psychologists with expertise in HIV and substance use, and case managers who work with this population to identify key components. These interviews started with Dr. Batchelder presenting evidence-based content to the individuals living with HIV and substance use disorder, and next their providers, iteratively refining the content and presenting the updated content in subsequent interviews. Through this process, Batchelder updated language, including reading level and word choice; examples used in exercises; figures in worksheets (e.g., changing cartoons that were perceived by individuals living with HIV and substance use disorders as child-oriented and condescending to emojis, which were perceived as more adult-oriented); the number of sessions; and added a text platform to meet the needs of the marginally housed individuals who had government subsidized cellphones without smartphone capabilities (Batchelder et al., 2020). She then tested the refined intervention content in a proof-of-concept study, after which she conducted exit interviews with participants to obtain additional insight for interpretation of the results. To then adapt the intervention for men who have sex with men living with HIV and substance use disorders who were sub-optimally engaged in HIV care in a different city, Batchelder et al. (under revision) then conducted another set of qualitative and quantitative interviews to confirm the need for the intervention and refine the intervention content and materials in culturally-relevant ways. The results from this work were then presented to local community advisory boards and community based organization that serve people living with HIV to obtain additional feedback. This later iterative refinement involved adding some new content identified in the interviews, including examples related to interlocking stigmatized identities described in the interviews (e.g., femmephobia) as well as additional content related to the role of stigmatizing language (using the “Addictionary”; Kelly, 2004). This trajectory of work exemplifies how clinical psychology researchers can involve empowered members of underserved groups at varying stages of clinical research to iteratively identify the problem or area of focus, inform the development and refinement of interventions, and to interpret the results, even when full CBPR methods are not feasible.

In addition to working collaboratively with members of underserved communities to identify areas in need of focus, specific research questions, and the development and iterative refinement of interventions, collaborations are imperative for accurately interpreting the results of research projects and ways that research results can inform advocacy initiatives. Involving community members and key stakeholders, via community advisory boards or peer advisors, in the interpretation of results often facilitates accurate and meaningful interpretation of research findings and the identification of areas in need of clarification. Further, as those who have lived experiences relevant to the questions being asked frequently have critical insights regarding the interpretation of research results and ways in which research findings can meaningfully inform advocacy strategies in the very communities they are geared to aid. For example, in a qualitative study of people with substance use disorders enrolled in group-based hepatitis C treatment in the Bronx, participants identified ways in which their group treatment impacted their views of themselves, such as through reducing internalized stigma (Batchelder et al., 2015). Further, group members noted that the comradery they fostered in group treatment generated advocacy initiatives, including lobbying for increased access to hepatitis C treatment for others.

When working with underserved individuals, it is imperative to foster trust through empowerment and gratitude for their contribution. In research contexts, advocacy includes ensuring research participants have a clear understanding of what is involved in the research that they are being asked to consider participating. In both clinical and clinical research contexts, practices of informed consent at appropriate reading levels at the outset of treatment can be useful to guide treatment, confirm participants understand the procedures taking place, and illustrate how their contribution will be used. Informed consent optimally allows patients to weigh the risks against perceived benefits and make an unbiased choice towards participating (or withdrawing) in any treatment or outcomes research. Working to ensure potential research participants feel comfortable and empowered to ask questions and voice disagreement is imperative in medical and research contexts.

Being aware of any barriers to informed consent is helpful for ensuring underserved individuals feel empowered in clinical and clinical research contexts. For example, when working with individuals with variable reading levels, consistently offering to read the consent form to participants, and normalizing this practice, can increase the likelihood that individuals who may be reluctant to disclose literacy challenges will engage in informed consent. Food insecurity can also be a barrier to informed consent; Batchelder and colleagues routinely offer impoverished marginally housed individuals with substance use disorders a snack and beverage prior to completing the informed consent process to ensure individuals are comfortable prior to the informed consent process and subsequent study visits. Working to foster trust and empowerment when working with underserved individuals requires facilitating active participation in informed consent, which often includes being cognizant of potential barriers including literacy level and unmet immediate needs when necessary (e.g., providing food).

One issue that may occur within hidden or low base rate populations is the issue of scarcity, which may require plans in place for thoughtfully addressing insufficient representation of a population’s feedback on a protocol. Either by using a formal method, such as CBPR, or by thoughtfully incorporating members of the population with whom clinical researchers are focused, lateral opportunities for offering insights, guidance, and interpretations will improve the quality of clinical research, the effectiveness of interventions, and the utility of research in advocacy endeavors even if the feedback comes from a small corps of community members.

For clinical research to effectively contribute to advocacy efforts, we propose that research questions, methods, and clinical interventions should be developed with the perspective of the target population in mind. When possible, clinical research should strive to equitably involve members of the target population and stakeholders at each phase. Efforts should be made to ensure all perspectives influence the formation of research questions, intervention development and refinement, and final interpretation. When it is not possible to involve members of the target population at each stage, involving individuals at selected stages can increase the likelihood that clinical research can inform advocacy. For example, involving target population members in the piloting of studies, giving feedback on the instruments being used, as well as the mode of delivery have been successfully implemented in Batchelder’s recent work.

Conclusion

In the present paper we defined health advocacy using Hubinette, Dobson, Scott, and Sherbino’s (2017) definition: that which helps to ensure access, proper navigation, resources, policy and systems in place resulting in a decrease of health inequities. Based on this definition, we propose that clinical psychology research aimed at identifying and addressing the health and well-being of underserved individuals has the potential to serve as a tool in informing advocacy as well as be a form of advocacy in itself. Further, we examined how clinicians and clinical researchers can achieve research that informs and contributes to advocacy, by involving tenants and strategies of CBPR even when full CBPR is not feasible, with a focus on the barriers often faced by underserved individuals accessing and navigating healthcare systems.

There is a long history of underserved healthcare consumers receiving sub-optimal treatment in medical, clinical psychology, and clinical research settings. This discriminatory historical context has directly contributed to poor access, undue barriers, and poor engagement in care—hurdles which must be addressed in order to improve the quality of care and its effectiveness. In the present paper we reviewed several ways that underserved individuals have been marginalized in healthcare and research settings, and discussed how the implementation of collaborative, inclusive practices might inform strategies for alleviating the chronic and systemic barriers to effective and accessible care for these historically underserved populations. Clinical psychologists must involve members of the communities with whom they work to accurately identify critical questions and problems facing communities, develop effective strategies to address those identified problems, collaborate with community members to accurately interpret the results of the research assessments, and work together to use the results in advocacy initiatives to improve the health and well-being of the communities.