What Exactly Are We Measuring?

Evaluating Sexual and Gender Minority Cultural Humility Training for Oncology Care Clinicians

Ash Alpert, MD; Charles Kamen, PhD; Matthew B. Schabath, PhD; Lauren Hamel, PhD; Julia Seay, PhD; Gwendolyn P. Quinn, PhD

Disclosures

J Clin Oncol. 2020;38(23):2605-2609. 

In This Article

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 al[38] 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]

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