**4. Addressing adversity: linking cultural competence to health disparities**

Over the past three decades, efforts to meaningfully address health disparities have largely focused on exhaustive characterization and definition of health disparities through multiple lenses – community, social, demographic, environmental, economic, race/ethnicity, gender, age, disabilities – with significantly less attention, until recently, to outcomes and effective interventions to reduce and/or alleviate them. In part this results from the complexity of developing and implementing interventions that can effectively and seamlessly leverage opportunities and traverse barriers within and between the health care system, provider, patient, academic and at large community components. The economic climate is forcing a 'lean thinking' approach to intervention development that focuses on innovative process and resource reallocation that will lead to measured and sustainable improvement in health outcomes. (Womack and Jones 2003) The Patient Protection and Affordable Care Act (PPACA Public Law 111-148), though imperfect and controversial, is an important first step in systemic funding to address health disparities. Furthermore, relevant outcome evaluation that goes beyond traditional metrics is central to development and assessment of effective interventions. Past naïve and archaic approaches focusing on one sector of the health care system, trusting that passive diffusion will decrease disparities throughout the entire system have failed. The health care crisis will continue to mandate an integrated, non-silo approach that meaningfully incorporates traditional (physicians, nurses, pharmacists, health educators) and emerging non-traditional (navigators, community health workers) into traditional and most importantly, non-traditional highly innovative and meaningfully integrate roles within the health care team and care delivery model.

#### **4.1 Cultural competence: the devil is in the details**

Culture, "the integration of patterns of human behavior that includes language, thoughts, communications, actions, customs, beliefs, values and institutions of different racial, ethnic, religious or social groups" is a powerful lens through which patients make virtually every health care decision. (Matthews-Juarez and Weinberg 2004) Cultural competence, "acquiring and integrating knowledge, awareness and skills about culture and cultural differences that enables Health Care Professionals to provide optimal care to patients from different racial ethnic and cultural backgrounds", a bidirectional requisite for oncology providers and their patients has been largely overlooked within the clinical continuum.

may explain the lower survival rates in African American and Hispanic women although data in Hispanic women is lacking. System factors pose significant problems with lower proportions of Hispanic women reporting timely receipt of appointments (35 vs. 49%) and higher proportion reporting difficulty in getting care when needed compared to White women (66 vs. 55.8%). Higher poverty rates, lower insurance rates and higher discontinuously insured rates, decreased English proficiency when compared to White populations characterize African American and/or Hispanic populations. (Smith Bindman, Miglioretti et al. 2006; Elkin, Ishill et al. 2010; Miranda, Wilkinson et al. 2011) Effective cancer care cannot be delivered without a multi-tiered approach that effectively links and integrates the patient with all components of the cancer care delivery system. Patient

**4. Addressing adversity: linking cultural competence to health disparities** 

Over the past three decades, efforts to meaningfully address health disparities have largely focused on exhaustive characterization and definition of health disparities through multiple lenses – community, social, demographic, environmental, economic, race/ethnicity, gender, age, disabilities – with significantly less attention, until recently, to outcomes and effective interventions to reduce and/or alleviate them. In part this results from the complexity of developing and implementing interventions that can effectively and seamlessly leverage opportunities and traverse barriers within and between the health care system, provider, patient, academic and at large community components. The economic climate is forcing a 'lean thinking' approach to intervention development that focuses on innovative process and resource reallocation that will lead to measured and sustainable improvement in health outcomes. (Womack and Jones 2003) The Patient Protection and Affordable Care Act (PPACA Public Law 111-148), though imperfect and controversial, is an important first step in systemic funding to address health disparities. Furthermore, relevant outcome evaluation that goes beyond traditional metrics is central to development and assessment of effective interventions. Past naïve and archaic approaches focusing on one sector of the health care system, trusting that passive diffusion will decrease disparities throughout the entire system have failed. The health care crisis will continue to mandate an integrated, non-silo approach that meaningfully incorporates traditional (physicians, nurses, pharmacists, health educators) and emerging non-traditional (navigators, community health workers) into traditional and most importantly, non-traditional highly innovative and meaningfully

Culture, "the integration of patterns of human behavior that includes language, thoughts, communications, actions, customs, beliefs, values and institutions of different racial, ethnic, religious or social groups" is a powerful lens through which patients make virtually every health care decision. (Matthews-Juarez and Weinberg 2004) Cultural competence, "acquiring and integrating knowledge, awareness and skills about culture and cultural differences that enables Health Care Professionals to provide optimal care to patients from different racial ethnic and cultural backgrounds", a bidirectional requisite for oncology providers and their patients has been largely overlooked within the clinical continuum.

navigation is a promising strategy that can affect this.

integrate roles within the health care team and care delivery model.

**4.1 Cultural competence: the devil is in the details** 

Treatment outcome starts with the patient's first encounter with the health care system. The quality of that encounter, distinct from customer service, significantly impacts the subsequent patient-provider relationship, ultimate partnership, adherence to treatment recommendations, quality of life during treatment and the survivorship continuum. Qualitative factors have an equal if not greater role than quantitative information in patient decision making. Therefore, the qualitative approach that the provider chooses to communicate the quantitative information is paramount. The provider must understand the culture through which the patient relates and understands information about medical and social aspects of the disease process and treatment.

Cultural nuances differ ethnically as well as geographically a factor which becomes especially important when dealing with populations in various phases of acculturation in a country or community. For example, in the United States, all phases of the patient-provider interaction center on the implicit understanding that the patient will make the ultimate treatment decision. In certain Hispanic cultures, the husband might make the ultimate decision while in Asian culture, the eldest son will be the decision maker. In African American culture, the children and spouse collectively drive the treatment decisions of the patient. Failure to address these decision makers through all phases of the patient encounter and decision making process will negatively impact on the overall quality of the providerpatient relationship and ultimately treatment compliance by creating an environment of mistrust and devaluing the patient and their support system.

Understanding how people from different cultures actually make treatment decisions is critical. In western culture, the process is linear- treatment discussion, research treatment options via internet/publications, analyze the data and reach a decision within a defined, usually short, timeframe. If the provider does not realize that the doctor's opinion rather than the research process may be the deciding factor for Hispanic patients, that the American Indian patient may want to discuss their condition with the tribal elders or healer, that African American patients may want to discuss their options with the family matriarch/patriarch and obtain *their* treatment decisions before informing the provider of the patient's treatment decision then the delay in treatment decision will not 'make sense'. Furthermore, the questions posed to the provider through the patient may in fact emanate from these other individuals. This can result in mismatched patient-provider expectations leading to miscommunication and narrow, biased interpretations of how 'capable' a given patient may be to 'understand' their treatment.

Subtle aspects of the patient encounter engagement process are important. African American patients expect direct eye contact as lack thereof conveys the message that the provider cannot be trusted. Conversely, Asian patients will avoid eye contact as direct eye contact is a sign of disrespect to the provider who is perceived, in that setting to have higher status. Conversely, listening to the provider's treatment discussion with closed eyes does not signify disinterest or information/emotional overload for the Japanese patient but indicates that the provider has the patient's full attention. Failing to directly address the husband of a Hispanic woman when making treatment recommendations is an insult to her husband. The importance of cultural competence in the provider patient partnership cannot be overstressed and is critical to effectively address health disparities.

Creating a Sustainable Cancer Workforce: Focus on Disparities and Cultural Competence 409

stakeholders implemented even a minority of the recommendations, disparities in clinical trials could be substantially reduced. Because of this complexity, eliminating disparities in clinical trials requires a multi-level systems approach and certainly one that requires the creation of a fully engaged and competent workforce. (Wilkinson and Marmot 2003; ICC

The EDICT Credo can serve as a framework for training and sustaining a workforce that ensures the appropriate inclusion of under-represented populations are ameliorated in the

All individuals will have the opportunity and necessary support to participate

Participants and researchers will understand and promote the benefits of diversity in

Results from clinical research will benefit the participants' communities and society at

Creating such a workforce will require attention to barriers related to researchers, referring physicians, and the recruitment process itself. For example, racial/ethnic minorities are underrepresented among researchers. Community physicians are often unaware of clinical trial opportunities and experience excessive administrative or financial burden related to clinical trials. Additional barriers include lack of institutional interest, infrastructure, staff time, sufficiently skilled research coordinators, and training in culturally competent

A competent workforce should be capable of understanding frequent patient barriers to recruitment that are exacerbated for underrepresented groups. These barriers include poor understanding of the research and its related risk; transportation difficulties and caregiver availability; participant fatigue and inconvenience; general lack of awareness that clinical trials are an option; mistrust due to previous unethical research experiences; cultural, linguistic, and literacy issues; inadequate paid work leave, childcare, or insurance coverage; misidentification of race/ethnicity; and relocations, extended visits, or return to countries of

While helping potential participants to "navigate" their way into, through, and after the clinical trial process is critical to improving inclusion of these groups in cancer research. The task is complicated by the fact that there are multiple professionals and paraprofessionals involved in recruitment and retention of participants in clinical trials at different points of contact along the continuum of cancer care. These include, but are not limited to, clinical researchers, research administrators, community health workers and promotoras,*,* nurses, patient navigators, physicians who refer patients, physician assistants, and social workers to

The Department of Health and Human Services (DHHS) Office of Minority Health (OMH) developed National Standards for Culturally and Linguistically Appropriate Services (CLAS) in 2000. The CLAS-And Clinical Trials (CLAS-ACT) Project helps to assess how well CLAS Standards are implemented in a single clinical trial or study as well as across multiple trials in an organization. CLAS-ACT materials may also be used to train research staff and administrators about CLAS standards. These standards are a straightforward method to support taking one significant step in providing a cancer workforce in general but in

future. The following beliefs guide the work of the EDICT Project:

voluntarily in clinical trials for which they are eligible.

communication skills related to clinical trial recruitment.

2009)

origin.

name a few.

clinical trials.

large.(ICC 2009)
