Cultural Competence and Humility in Infectious Diseases Clinical Practice and Research

Abstract

Infectious diseases as a specialty is tilted toward social justice, and practitioners are frequently on the front lines of the battle against health inequity in practices that are diverse and sometimes cross international borders. Whether caring for patients living with the human immunodeficiency virus, tuberculosis, or Ebola, infectious diseases practitioners often interact with those at the margins of societies (eg, racial/ethnic/sexual/gender minorities), who disproportionately bear the brunt of these conditions. Therefore, cultural barriers between providers and patients are often salient in the infectious diseases context. In this article, we discuss cultural competence broadly, to include not only the knowledge and the skills needed at both the organizational and the individual levels to provide culturally appropriate care, but also to include “cultural humility”—a lifelong process of learning, self-reflection, and self-critique. To enhance the quality and the impact of our practices, we must prioritize cultural competence and humility and be mindful of the role of culture in the patient-provider-system interactions, in our larger healthcare systems, and in our research agendas and workforce development.

DEFINING CULTURAL COMPETENCE IN THE CONTEXT OF INFECTIOUS DISEASES PRACTICE

In 2003, the Institute of Medicine published their seminal report, Unequal Treatment [1], which documented the striking extent of racial and ethnic health disparities within the US healthcare system. Chief among the underlying reasons cited for these inequities was the recognition of specific barriers faced by racial and ethnic minorities related to cultural differences that often arise between them and their treating healthcare providers and health systems. This report and others spawned a large proliferation of research and institutional policies focused on improving “cultural competence” as a strategy for addressing health inequity. Now, approximately 2 decades later, much has been written about cultural competence, but the inequities persist. In addition, disparities beyond race and ethnicity—impacting individuals who represent minority groups and/or are marginalized due to their nationality, sexual orientation, gender identity, religious background, disability, socioeconomic status, or other factors—are appropriately being recognized with increasing frequency. Therefore, cultural competence is more complex than it was in the past, yet it is also increasingly critical. Prioritization of cultural competence in the field of infectious diseases (ID) is an ethical imperative as well as a practical necessity.

Cultural competence has been defined in a variety of ways. One broad definition, from Betancourt et [2], is as follows: “Cultural competence in health care entails: understanding the importance of social and cultural influences on patients’ health beliefs and behaviors; considering how these factors interact at multiple levels of the healthcare delivery system; and finally, devising interventions that take these issues into account to assure quality health care delivery to diverse patient populations”. Several features of this definition are notable: (1) the emphasis on social and cultural context, reflecting a holistic or biopsychosocial approach to patient care; and (2) the multilevel nature of cultural competence, which operates at interpersonal levels (eg, in interactions between patients and providers) as well as organizational/systems levels (eg, in resources available for interpreter services).

Several critiques of cultural competence have been raised. First, the idea of “competence” implies a static end point; but in reality, no individual healthcare provider can ever be fully knowledgeable or skilled in caring for every patient with every cultural background. Second, competence or “competency” implies a binary yes/no—that an individual is either competent or incompetent—when in reality practitioners will generally fall somewhere in between these 2 extremes. Third, emphasis on learning specific facts about other cultures carries a risk of leading to stereotyping cultural groups and of oversimplifying the complex constructs of culture as merely equivalent to minority racial group identity. As a result of these critiques, some have argued for the prioritization of “cultural humility” over cultural competence [3]. Cultural humility has more of an emphasis on social justice, and it is described as a lifelong process of learning, self-reflection, and self-critique. Proponents of this approach emphasize changing provider attitudes and self-awareness, as opposed to teaching specific knowledge, skills, or behaviors [4]. Of note, some scholars have observed that the definitions of cultural competence have changed and expanded over time to include related concepts such as cultural humility, responsiveness, and sensitivity [5].

The reasons for prioritizing cultural competence and humility in ID practice and research are compelling. The first, and most important, is “justice”. As eloquently stated in the 2019 Infectious Diseases Society of America (IDSA) Inclusion, Diversity, Access and Equity (IDE&A) Roadmap and Strategies, “Infectious Diseases as a specialty is uniquely tilted toward social justice by the very nature of the conditions we treat” [6]. Whether caring for patients with the human immunodeficiency virus (HIV), tuberculosis (TB), sexually transmitted infections, or Ebola, ID practitioners often gravitate towards underserved populations. Cultural competence should be prioritized for the simple reason of advocating for ID patients, who are more likely to be racial/ethnic/sexual/gender minorities or lower social economic status. There are other, more pragmatic reasons to prioritize cultural competence as well. Enhancing cultural competence at the individual and organizational level is likely to lead to improved quality of care, with potential cost implications. Patient satisfaction, which is increasingly incentivized by health systems, has also been clearly linked to patients’ perceptions of provider cultural competence [7]. Therefore, cultural competence is more than a buzz phrase—ideally, it is an orientation and an approach that embodies respect for other peoples’ lived experience (in a world that is increasingly interconnected), as well as a continuous process of enhancing one’s own skills to improve care for patients regardless of their background. Such practices are particularly critical for modern day ID practitioners, who are often on the front lines of the battle against health inequities, and whose practice and research increasingly cross international borders to respond to (re)emerging infections and outbreaks.

NEED FOR CULTURAL COMPETENCE AND HEALTH EQUITY IN AN INCREASINGLY INTERCONNECTED WORLD

The United States attracts immigrants from every corner of the globe and is one of the most diverse countries in the world. Of the 329 million people that live in the United States, 50.8% are women, 39.6% are racial/ethnic minorities, 13.5% are foreign-born, an estimated 3.4% are lesbian, gay, bisexual, transgender, queer (LGBTQ), and 11.8% live in poverty [8, 9]. There is also a wide economic divide with 42% of the wealth controlled by 1% of the population [9]. The diversity of the United States offers many advantages to society as a whole. However, the US healthcare system and its providers are not always equipped to provide culturally competent care for patients who are racial/ethnic, sexual, gender, or other minorities. This issue is particularly salient in the ID field, where the disease conditions encountered disproportionately affect those at the margins of society [10, 11]. The US HIV epidemic is a prime example of this phenomenon. Human immunodeficiency virus incidence, prevalence, and mortality have a strikingly disproportionate impact on groups including African American and Latino gay men, who face stigma and discrimination on multiple fronts [12]. Despite great advances in the ID field including vaccine development, new anti-infective agents, and diagnostics, disparities in health outcomes remain [11].

In addition to the need to work with a diversifying population within the United States, ID practitioners and researchers also increasingly need to expand their practices outside of national borders. Factors including global warming, deforestation, and human encroachment on ecosystems, together with increasing mobility and interconnectedness of populations, have led to a sharp increase in emerging infections and outbreaks. The past few decades have witnessed an unprecedented rise in global ID outbreaks including the 2002–2003 severe acute respiratory syndrome (SARS) outbreak, the 2004 avian (H1N5) influenza outbreak, the 2009 pandemic H1N1/09 (swine flu), the 2012 Middle East respiratory syndrome, the 2014–2016 Ebola outbreak, and the 2015–2016 Zika epidemic in the Americas [13, 14]. The world is currently grappling with the emergence and persistence of Ebola in the Democratic Republic of Congo and the 2019–2020 novel coronavirus (SARS-CoV-2; COVID-19 disease) outbreak [15]. Of note, the burden of these outbreaks is superimposed on a substantial baseline of ongoing global epidemics of HIV, TB, malaria, as well as the growing global threat of antimicrobial resistance. The burden of these diseases is not distributed evenly, but it disproportionately impacts the 84% of the world’s population that reside in low- and middle-income countries [16], many of whom live in conditions with overcrowding, poor sanitation, limited access to clean water, and fragile healthcare infrastructure—all conditions that foster the emergence, spread, and poor outcomes of infections. Therefore, it is of little surprise that ID account for over 25% of the estimated 57 million deaths that occur globally each year, a majority of which occur among the poor and marginalized groups [17, 18].

These (re)emerging infections and outbreaks, along with the endemic infectious disease burden, underscore the global need for ID specialists and the demand for practices that cross international borders. Anecdotally, we know there has been a rise in the number of healthcare workers (many of whom are ID practitioners) who travel overseas to provide care, teach, and conduct research. The Association of American Medical Colleges (AAMC) recently reported a large increase in enrollment in global health electives among US medical students—while less than 10% participated in such electives in 1995, this number rose to 30% between 2012 and 2016 [19]. Cultural barriers between providers and patients are likely to be even more salient in international contexts, including language barriers as well as the need to understand complex cultural norms that are rooted in political, social, and economic traditions [19]. Therefore, cultural competence and humility are critically important to ID practitioners because they increasingly work internationally across borders [20].

NEED FOR CULTURAL COMPETENCE AND HUMILITY IN INFECTIOUS DISEASES RESEARCH

Empiric data that guide evidence-based medical practices in ID are generated from basic, clinical/translational, and behavioral science research. There are several key benefits to participation in clinical trials and other ID-related research for people living with or at risk for various ID. First, recruitment of a diverse participant group is important to be able to draw inferences about subgroup differences and intervention efficacy in various populations. Nonrepresentative research samples yield data that are not fully applicable to the patients that will be treated based on these findings. Second, clinical trials can give patients access to new, potentially lifesaving therapies before they are widely available. Finally, participants may gain other intangible benefits from their involvement with research—such as positive feelings from contributing to the greater good and/or an improved understanding of the healthcare system.

Given the above considerations, individuals from underrepresented backgrounds should ideally be involved in research at least at comparable rates to other individuals, and one could make the case that minorities should be intentionally overrepresented in many cases. It is regretable that although the burden of ID including HIV, TB, and viral hepatitis are high among racial/ethnic minorities in the United States, they comprise a relatively small proportion of clinical trials participants [21–23]. The reasons for this underrepresentation include but are not limited to the following: (1) deep-rooted mistrust of research emanating from historical deception of these populations in clinical research (eg, Tuskegee Syphilis Study) [21, 24–28]; (2) low levels of education, health literacy, and/or language barriers that limit the understanding of research goals [28, 29]; (3) competing personal and social priorities [21, 30]; (4) unfavorable perceptions and preconceptions from research personnel against minority study participants [21, 30, 31]; (5) concerns about confidentiality and disclosure of protected health information that could lead to adverse legal, social, and economic consequences [32–34]; and (6) limited access to research participation opportunities due to socioeconomic or other factors. These barriers, taken together, contribute to low clinical study participation among racial/ethnic minorities, limiting interpretation of study results and generalizability to these population groups, and potentially further exacerbating existing disparities. Less is known about individuals who are other types of minorities besides/in addition to race (eg, sexual and gender minorities, individuals with disabilities, lower socioeconomic status individuals). However, it is likely that these groups experience similar barriers to research participation. Given the enormous public health and ethical implications of nonrepresentative research enrollment, it seems that although cultural competence and humility are perhaps discussed more commonly in the clinical sphere, there is also a need to apply this critical lens to work in research settings.

STRATEGIES FOR IMPROVING CULTURAL COMPETENCE AND HUMILITY

Strategies to improve cultural competence and humility have been examined at both the individual and system levels. Individual level interventions are aimed at improving providers’ awareness, knowledge, and skills, whereas institutional level interventions aim to integrate cultural competence into policies and practices. Some of these strategies have been effective in improving patient satisfaction [7]; however, the association between cultural competence interventions and downstream patient outcomes or impact on health disparities is less well documented [35–39]. Nonetheless, it is imperative that healthcare providers and organizations strive to improve their cultural competence and humility because there is emerging evidence that culturally competent care improves patient outcomes [39–41].

One of the most common individual-level interventions is provider training. Cultural competence training has been shown to be effective in improving healthcare providers’ cultural knowledge, awareness, attitudes, and skills [42, 43]. In addition to improving providers’ cultural awareness, understanding of multiculturalism, and ability to communicate with minority patients, Majumdar et al [44] found that training led to improvement in patients’ utilization of social resources and overall functional capacity without an increase in healthcare expenditure. Provider training on LGBTQ-specific health disparities, terminology, stigma, sexuality, and sexual history taking has also been shown to improve healthcare professionals’ knowledge, attitudes, and practices in the care of LGBTQ patients [45]. One limitation of cultural competence training is the lack of a standardized framework in methodology, frequency, or duration, which limits widespread adaptation and generalization of the outcomes of such training.

Individual-level interventions can also be aimed at improving multicultural patients’ navigation of the healthcare system. Patient-focused interventions including health literacy programs [46] and culturally tailored disease-specific interventions [47] have been shown to improve patients’ clinical outcomes. Fisher et al [48] examined the effects of “cultural leverage” on healthcare provision to non-white minorities in the United States. They defined cultural leverage as a focused strategy for improving the health of racial and ethnic minority communities by using their cultural practices, products, philosophies, or environments as vehicles to facilitate behavior change of patients and practitioners. In their review, they examined interventions that aimed at modifying health behaviors of individuals, increasing access to healthcare and improving the ability of healthcare systems to serve people of color. They found that these culturally centered interventions increased patients’ knowledge for self-care as well as decreased barriers to access to care.

System-level interventions to improve cultural competence and humility include continuous audit and quality improvement [49, 50] as well as organization-level policies and strategies [51, 52]. Executive level support is essential to sustaining efforts to improve cultural competence at the system level. Organizations aiming to improve cultural competence should develop action plans that incorporate realistic and measurable outcomes [53]. Another effective way to improve organizational cultural competence is by appointing staff who represent the community served by that organization. Diversity in staffing is also important for research teams; hiring of research staff who reflect the population(s) of interest can enhance cultural relevance as well as diminishing barriers for participation [54].

In addition to hiring frontline staff who reflect the patient population, another important cultural competence strategy is to increase the number of clinical providers and researchers from backgrounds in a way that mirrors the diversity of the community. The current low level of representation of underrepresented minorities ([URM] African Americans, Latinx Americans, and Native Americans) in science, technology, engineering and mathematics (STEM) fields should be of concern to all. In 2007, URM represented 28% of undergraduate enrollment in the United States, but only 17% of awarded bachelor’s degrees in STEM. The gap widens in subsequent stages of training, with URM earning only 13% of master’s and 7% of PhDs in STEM disciplines. Underrepresented minority students have significantly lower college completion rates after 4 and 5 years of study in STEM fields than white and Asian American students [55]. Trends are similarly dispiriting when representation in medical education is examined. According to the AAMC, URM students made up approximately 21% of medical school matriculants in 2019–2020 [56]. In addition, a recent analysis showed that despite increasing numbers of URM applicants to medical school between 2002 and 2017, URM students actually make up a smaller proportion of medical school matriculants than they did in 2002—ie, underrepresentation is worsening [57].

Although some have attributed the low completion rates of URM students in STEM/medical education and careers to poor precollege preparation [58, 59], the major role of the environment in many academic centers—which is often not supportive or inclusive for URM students and trainees—plays a major role as well. Underrepresented minority trainees and junior faculty in medicine receive less mentorship than their counterparts [60], and they are less likely to achieve race/ethnicity concordance in mentorship—a factor known to add significant value to the mentor-mentee relationship [61]. Compensation and funding for URM researchers are also significantly lower, and URM faculty are less likely to be promoted or tenured [62, 63]. In 2017, for example, the median pay for white ID physicians was 15% higher than the median pay for ID physicians of URM backgrounds [64, 65].

In response to these findings, the IDSA has recently launched a deliberate effort to diversify its leadership. The society’s IDA&E taskforce [6] has created a roadmap that includes elements of data, education, communication, action, and accountability [6]. In addition, the society created the Leadership Development Committee, which is tasked with using the IDA&E principles as a guide to recommend strategies for identifying and cultivating leaders to advance the Society’s strategic priorities.

ASSESSING PROGRESS AND OUTCOMES

The ultimate goal of cultural competence and humility initiatives in the healthcare setting is to equip the individual practitioner and the healthcare organization with the know-how, motivation, skills, attitudes, and self-awareness needed to effectively navigate cross-cultural differences in order to work effectively together in the delivery of healthcare to a diverse population. At the organizational level, the hallmarks of commitment to cultural competence and humility include a diverse workforce reflective of the population served, policies and procedures that are inclusive, a personnel pipeline capable of sustaining diversity in the workplace, fairness in retention and promotion, equity in compensation and other resources, training about the culture, the norms and the language of the community being served, and customization of the healthcare facility to be welcoming to a diverse client population. At the individual level, measures of cultural competence should include personnel knowledge about cross-cultural differences, inclusive decision making, beliefs and values, awareness of personal implicit biases and stereotypes, proficiency in diversity management and cross-cultural communication skills, and commitment at the individual level to IDA&E principles [66].

Measuring these qualities for a given individual or an organization may not be as easy as it appears. Many components of cultural competence are subjective and therefore difficulty to quantify. However, a crucial first step is to understand the prevailing cultural climate within the organization and to develop a strategy to strengthen areas of deficiencies, followed by periodic re-evaluation and measurement of incremental changes and progress. This could include quantitative and qualitative assessment and feedback from all personnel, especially those from underrepresented backgrounds, and solicitation of feedback through various means including surveys and social media. Evaluation questions should be directed at eliciting the inclusiveness of the organization, its hiring practices, workforce pipeline, turnover rates, equity in compensation, and the deliberateness of the IDA&E efforts. Metrics that have been successfully used in this regard include the following: (1) velocity of movement across the ranks, ie, the times it takes to get hired, promoted, or moved up the organizational ladder; (2) diversity within succession plans; (3) proportion of URM employees with influential mentors; (4) impact of mentorship—how well it leads to upward career movement versus lateral progression; (5) engagement and diversity/inclusion scores; and (6) employee engagement scores by race or gender [67]. These metrics should ideally be introduced early in the course of the biomedical research and healthcare workforce development, and cultural competence should be promoted both locally and internationally and in small private healthcare practices as well in major large academic and private medical healthcare systems.

CONCLUSIONS

As physicians, researchers, and other leaders in a field that prides itself on social justice, ID practitioners must tackle disparities in infectious disease outcomes as a top priority in the field. No matter the setting, we must be mindful of the role of culture in our patient-provider interactions, in our larger health systems, and in our research agendas and recruitment. In addition to the ID workforce diversity goals outlined in the IDSA IDA&E roadmap, we must also strive for representative staffing at every level of our organizations and research teams. Recognizing the impact of these initiatives on clinician-patient interactions and the role they play in alleviating inequality in healthcare access and delivery is foundational to the development of culturally competent practices tailored to the local needs. Effective training in the principles of IDA&E that is customized to the domestic and the international setting is needed to overcome these impediments and to enhance cultural appropriateness in the delivery of healthcare [6]. We must implement cultural competence trainings that not only teach skills and knowledge about other cultures, but also emphasize humility and self-reflection. Finally, we must strive for accountability to the communities where we practice and conduct research, ideally remaining in constant dialogue so that the experiences and priorities of marginalized persons are elevated. The lofty, overarching goals that are central to the ID field—such as the Ending the HIV Epidemic plan for America, or the eradication of polio—will never be achieved without culturally competent care, research, and policy.

Notes

Financial support. The authors’ research efforts are funded by grants from the National Institutes of Health.

Potential conflicts of interest. R. B. reports grants and/or personal fees from ViiV Healthcare, Merck & Co, Teratechnologies, and Napo Pharmaceuticals. All authors have submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. Conflicts that the editors consider relevant to the content of the manuscript have been disclosed.