What Exactly Are We Measuring? Evaluating Sexual and Gender Minority Cultural Humility Training for Oncology Care Clinicians

INTRODUCTION

Sexual and gender minority (SGM) individuals (including lesbian, gay, bisexual, transgender, and queer) experience substantial cancer-related health disparities compared with heterosexual individuals (who partner exclusively with opposite-gender people) and cisgender individuals (whose gender identities are the same as their sex assigned at birth). For example, gay men and bisexual women have higher cancer prevalence than heterosexuals.^1,2 Gender identity data were not collected in these epidemiologic studies, so less is known about cancer rates in transgender populations; limited data suggest the incidence of specific types of cancers is higher, although overall incidence may be similar.^3-5 SGM patients report negative experiences with oncologic care, including stigmatization, barriers to timely diagnoses, mistaken assumptions, disrespect of gender identities, and lack of inclusion of partners.⁶ After cancer treatment, SGM patients with cancer continue to experience disparities, including increased risk factors for cancer recurrence, more tobacco use, poorer quality of life, more anxiety and depression, and more fear of cancer recurrence.^7-14

A minority (20%-40%) of oncology clinicians (physicians, nurses, and advanced practitioners) feel knowledgeable to address SGM-specific health disparities, but a majority (70%-80%) want education regarding the unique health needs of SGM patients with cancer.^15,16 To improve clinicians’ knowledge, institutions have begun providing SGM-focused training for oncology clinicians.^17,18 The goal is to reduce barriers SGM people face in accessing high-quality cancer care and decrease disparities in cancer outcomes. However, few training programs have collected data regarding whether training is effective. To optimize the delivery of cancer care and reduce cancer disparities among SGM patients, we must decide which measures will tell us whether clinician training programs work. The aims of this commentary are to outline frameworks to guide SGM-focused cultural humility training in oncology, describe existing measures of cultural humility training, and discuss future directions.

FRAMEWORKS FOR SGM-FOCUSED TRAINING IN ONCOLOGY

Training programs designed to enhance clinicians’ ability to work with minority and other underserved patients often draw on one of several interrelated frameworks.¹⁸ Historically, training programs have referenced the framework of cultural competency. With regard to SGM patients, cultural competency encompasses a requisite understanding of cultural and social influences that affect the ability of healthcare professionals to provide appropriate care for patients with diverse sexual orientations and gender identities.^18-20 This framework has been criticized for the assumption that a person can ever be competent in the diverse experiences of another culture. Cultural humility incorporates a lifelong commitment to self-evaluation and critique, to redressing the power imbalances in the physician-patient dynamic, and to developing mutually beneficial and nonpaternalistic partnerships with communities on behalf of individuals and defined populations.^21(p123) Cultural humility training emphasizes understanding the influence of systemic oppression on the health of people with multiple, intersecting stigmatized identities.^22-24 Given that SGM individuals come from every cultural background and therefore have multiple intersecting identities, we advocate using the framework of cultural humility to guide SGM-focused training in oncology. Other distinct but conceptually related frameworks are defined in Table 1.

TABLE 1.

Terms Associated With Cultural Communication

SGM-focused cultural competency/humility training for health care clinicians has proved efficacious in improving clinician knowledge about SGM patients’ needs.^24,25 To date, no studies have examined whether such training improves SGM patient outcomes. Parallel studies of racial and ethnic cultural competency/humility training demonstrate a moderate effect on satisfaction with care, trust in physicians, and access to health care.^25-28 Other studies have shown little to no effect on patient outcomes.^29,30 The quality of evidence arising from these studies is generally low because of methodologic issues, including lack of validated measurement strategies.^25,31

MEASURES OF SGM CULTURAL HUMILITY IN ONCOLOGY

Presently, few validated measures exist to assess the outcomes of SGM cultural humility training, and none are specific to oncologic care. A systematic review of SGM-focused cultural competency/humility programs among medical and allied health students and clinicians identified 13 studies. Each evaluated training programs using trainee knowledge and/or attitude scales.³² Among studies assessing knowledge, all but one used nonvalidated measures designed by the researchers.³² A majority of studies assessing attitudes used existing scales and indices developed outside of the training context.³³ An increase in trainees’ knowledge may not be associated with increased humility, a more patient-centered stance, or improvement in SGM patients’ outcomes. Similarly, measures of attitudinal change may elicit a high degree of social desirability and may not lead to behavior change.^34,35 Limitations and advantages of these measures have been summarized elsewhere.³⁶ New measures are needed that capture facets of cultural humility specific to care of SGM patients, correlate with clinical practice changes, and lead to improvements in SGM patient outcomes.³⁷

Communication theory can serve as a guide for evaluation of SGM cultural humility training. Effective communication in medical interactions is “the ability to gather information to facilitate accurate diagnosis, counsel appropriately, give therapeutic instructions, and establish caring relationships with patients.”^19(p177) Poor communication with racial/ethnic minority patients is associated with poorer pain control and postsurgical outcomes and fewer diagnostic tests.^17,28 Cultural humility training could ameliorate health disparities in SGM patients by improving the quality of communication delivered by oncology clinicians. However, measuring change in communication quality is as complex as measuring change in attitudes. Multiple contextual factors influence the style and content of communication in oncology. Furthermore, communication theory posits that communication takes place within the receiver; communication is successful only when the receiver correctly interprets the sender’s message. If the patient is receiver and the clinician the sender, only the patient can truly evaluate the clinician’s cultural humility. However, no studies to date have evaluated SGM patient response to a clinician’s cultural humility.

Practice changes specific to the care of SGM patients with cancer should be measured as outcomes of cultural humility training. For example, unlike many racial and ethnic minority identities, the identities, relationships, and experiences of SGM patients may not be visible. After institutional cultural humility training, oncologists should be better prepared to ask patients about their sexual orientation and gender identity (SOGI) and use this information to improve shared decision making. In tandem, clinicians must learn to use language inclusive of SGM experiences (eg, partner rather than wife or people with breast cancer rather than women with breast cancer) and ask and respect patients’ names, pronouns, and surgical or quality-of-life preferences, which may differ from physicians’ expectations, as they may with any patient.^12,14,17 Administrators should be motivated to revise patient intake forms and educational material to be inclusive of SGM people. Other aspects of the health care environment should also change. For example, gender-neutral bathrooms should be made available, and gendered spaces (eg, men’s prostate center) should be renamed.

To measure cultural humility and its influence on the health of SGM populations, we advocate incorporating all of the above into a multilevel evaluation strategy that emphasizes structural change. The Betancourt et al³⁸ model for using cultural humility interventions to address health disparities in racial and ethnic minority patients provides a template. This framework advocates for implementing cultural humility interventions at the organizational, structural, and clinical levels in health care settings and measuring patient-reported variables, including satisfaction, adherence, and outcomes.³⁸ Creating a safe environment for marginalized patients also leads to the development of a safe environment for staff. Improving the experiences for SGM patients and employees would likely be mutually reinforcing, and therefore, both should be evaluated. On an organizational level, evaluations of SGM cultural humility training in oncology should include (1) an increase in SGM personnel, (2) an increase in job satisfaction of SGM personnel, and (3) endorsement of SGM personnel for leadership positions. On a structural level, evaluations should include (1) the presence of nondiscrimination policies and patient bills of rights that include SOGI, (2) the collection of SOGI data in clinical records, and (3) support resources and materials tailored to SGM patients. On a clinical level, evaluations should assess SGM patient outcomes and SGM patient satisfaction for physicians who have completed cultural humility training versus those who have not. ASCO endorses many of these changes in its position statement on reducing cancer disparities in SGM patients.³⁹ The Human Rights Campaign has formalized these organizational and structural metrics in its Healthcare Equality Index (HEI). Scores on this index could be used as an evaluation strategy after SGM cultural humility training. However, association between HEI score and provider attitudes and behaviors is unclear, and no studies have evaluated association of these organizational and structural metrics with patient outcomes.⁴⁰

FUTURE DIRECTIONS FOR SGM CULTURAL HUMILITY TRAINING IN ONCOLOGY

Thus far, we have argued that cultural humility serve as a framework for SGM-focused training in oncology and for multilevel evaluations of such training with attention to structural change. Most importantly, we advocate for the creation of SGM oncology cultural humility training and patient-centered measurement tools in partnership with SGM patients who have had cancer, particularly people of color, those who are working class, and those with other intersecting marginalized identities.^6,41-44 Partnerships between community stakeholders and clinicians have the potential to decrease hierarchic power dynamics between patients and physicians and improve relationships. The Betancourt et al³⁸ model offers several patient-level measures that could be cocreated in collaboration with SGM stakeholders. For example, SGM patients with cancer have outlined domains that contributed to their satisfaction with care: entering clinical spaces that acknowledge their identities, being assured of safe and respectful treatment, and interacting with providers who engage in patient-centered communication. Patient-derived components of satisfaction should be measured after cultural humility training. Additional patient-level measures should include whether SGM oncology patients remain in care, which is particularly germane in situations where SGM patients might leave care because of mistreatment. Additional metrics of SGM cultural humility training in oncology should be derived in partnership with stakeholders. Setting goals of training and developing relevant measurement tools should be a continuous, context-dependent, and iterative process.

The question for future studies to answer is how can providers who have been trained to be more culturally humble with SGM patients, directly improve their patients’ health? An SGM patient who feels understood and accepted may be more likely to disclose important facts about their health and behaviors, allowing their clinician to make more timely diagnoses and/or more relevant treatment recommendations. Moreover, a patient who feels accepted by their clinician may be more likely to stay in care and experience less cancer-related distress. Future studies should evaluate the association between particular cultural humility trainings, practice and systemic changes, and SGM patient satisfaction, engagement, and outcomes based on assessments created in collaboration with community stakeholders. The results of such studies should be provided to stakeholders and researchers to be used in a process of continuous growth and quality improvement.

Training is unlikely to be sufficient in changing the climate of care for SGM people. We also recommend that health care policies reinforce individual and system changes. For example, we strongly recommend that cancer centers provide incentives (eg, pay increases) based on SGM and other marginalized patients’ engagement and satisfaction with care. Additionally, we recommend the National Cancer Institute (NCI) include in its assessment of eligibility for NCI designation (1) the satisfaction, engagement, and outcomes of SGM and other marginalized patient populations compared with nonmarginalized patient populations, and (2) the satisfaction, retention, and promotion/rank of SGM and other marginalized clinicians and administrators.

ASCO and the National Institutes of Health have classified SGM persons as a population experiencing health disparities.^39,45 Despite this designation, and the many health disparities experienced by SGM patients with cancer, the field of SGM cultural humility in oncology is in its infancy. Although there is much promise in improving structural, organizational, and clinical aspects of oncology care to meet the needs of SGM patients, more work is needed in developing frameworks for evaluation and specific measures of change. To build medical systems that are truly inclusive of marginalized people, we must be committed to radical change in our individual relationships and systems. These changes must be visualized and developed by marginalized patients and clinicians hand in hand with our allies with an eye toward achieving the ultimate goal of reducing discrimination and eliminating health disparities.

AUTHOR CONTRIBUTIONS

Manuscript writing: All authors

Final approval of manuscript: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

What Exactly Are We Measuring? Evaluating Sexual and Gender Minority Cultural Humility Training for Oncology Care Clinicians

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jco/authors/author-center.

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Gwendolyn P. Quinn

Honoraria: FLO Health

No other potential conflicts of interest were reported.