**6. A roadmap towards culturally competent community based participatory cancer care**

To date, health systems research has focused disproportionately more on health services research than community-based public health systems research. Likewise, funding for Community Based Participatory Research (CBPR) is orders of magnitude less than traditional biomedical research. In both instances failure to make progress is complex and advocating for one type of research over the other is counterproductive and may hurt rather than help strengthen the science base required to address cancer health disparities. Perhaps the most fundamental root cause of health disparities is infrastructure in general and the health infrastructure specifically: where you live indeed determines your health.

The three core components of the health infrastructure- workforce, organizational setting, and health system capacity- directly influence a community's health status. Overlaying this already complex relationship is the need to deliver culturally competent care to in our case communities with a historic burden of cancer health disparities. Figure 4 presents a multidimensional framework depicting the relationship among the three core components in the context of delivering culturally competent cancer care.

The most important perquisite for successful culturally competent care is the collaboration and active participation of the community. Rather than focusing on a community's needs only, asset-driven participation fulfills a pivotal role to inform the development of a culturally competent cancer care workforce on one hand and to embed community assets as an important component of the health system capacity portfolio on the other. Reciprocally, neighborhood community health centers can embed culturally competent care and serve as an anchor of community sustainability. This enriched portfolio can also form the nurturing professional workplace setting of a culturally competent health workforce. In turn, this workforce can also stimulate transformation leading to a better functioning culturally competent health system. This framework also allows for cultural *targeting*—focusing on a culturally-specific population—as well as culturally *tailoring* a health intervention or program to maximize community benefits. This conceptual framework goes beyond the role of cultural leverage in interventions to allow for assessing not only the impact of a health action or intervention as a silo effort; rather it operationalizes the three core components as

Creating a Sustainable Cancer Workforce: Focus on Disparities and Cultural Competence 419

developing nations lack the resources to provide even the basic components of the cancer care continuum including screening mammography and radiation therapy. While there is a growing visibility regarding each of these three forces of change no comprehensive effort to

From a health workforce perspective, efforts to counteract these forces have largely amounted to a number of training courses targeting practicing health care providers, "special" courses or lectures on cultural competence for those still in the pipeline, and research efforts which often last only until the end of the funding period. Exemplary exceptions targeting the practicing health workforce such as the cancer care competency case studies from C-Change are included in this chapter. The Interprofessional Education Collaborative spearheaded by the Association of American Medical Colleges (AAMC), and consisting of the Association of Schools of Public Health, American Association of Colleges of Nursing, American Association of Colleges of Osteopathic Medicine, American Association of Colleges of Pharmacy, American Dental Education Association has recently published a transdisciplinary competency model to guide the education of the represented disciplines with the desired outcome of more holistic frontline practice.(IPEC 2011) This signals an increasing realization that discipline-specific graduates may not adequately perform on today's practice frontline. A more persistent demand is coming from the increasingly culturally diverse consumers of graduate health education: the " is there and app for this" generation is not only calling for a change in instructional delivery, but is also

more in tune with its future customers and the global health threats facing them.

AAMC and ASPH are engaged in a collaborative partnership to develop a set of core cultural competencies appropriate for medical-, public health students and those in other health-related educational institutions to bolster the delivery of health care services especially to underserved, diverse populations.(Lichtveld 2010) The overarching aims of the initiative were: to illustrate cultural competence as an effective cross over topic area for students in both academic medicine and public health; to demonstrate how cultural competence can advance health disparities research in medical and public health education; and to provided most needed examples of how to incorporate cultural competencies into curricula and practica to graduate more culturally competent practitioners. There are several unique features to this joint effort: there is full agreement from both organizations that the emphasis should be on embedding cultural knowledge, skills, and attitudes medicine and public health education and practice rather than creating separate, standalone courses; The explicit anticipated outcome is a patient-centered approach in a community setting embracing both the customers of medicine and public health in a holistic fashion; the competencies were designed deliberately broad to not only allow for integration and tailoring within the scope of practice but also support pedagogical approaches accommodating the progressive stages of learning. Therefore, the competency set is not intended to be implemented in its entirety giving schools of medicine and public health

**6.2 A core set of cultural competencies for medicine and public health** 

flexibility in application while providing benchmarks of learning performance.

The competencies are categorized in three domains: knowledge- focusing on educational learning outcomes-, skills- representing practice competencies-, and attitudes. Included in the competency set are bridging competencies, logically linking one domain to the other,

derive community-based solutions has been undertaken to date.

one interconnected health system: the community as health seeking beneficiaries, the health workforce as providers of culturally competent care, and the health system as the locus of health services within communities.(Fisher, Burnet et al. 2007) This interconnected system will facilitate what has eluded many cancer health disparities scientists to date: transforming impact ascertainment of health intervention from behavioral outcomes to functional health status. This paradigm shift will result in targeting the community rather than the individual to benchmark impact.

Fig. 4. Culturally competent community based participatory cancer care.

#### **6.1 Creating a culturally competent cancer care workforce: forces of change and opportunities**

Among the plethora of challenges are three forces of change directly affecting developing a cadre of culturally competent cancer care providers: the new primary care practice, the rapidly changing demographics, and cancer as a global chronic disease burden. The "new" primary care practice represents a "back to the future" phenomenon in some instances- the primary care physician's role becomes one of a communicator who empowers, informs, and engages patients in their care.(Fiscella and Epstein 2008) Team-based care requires skills in leadership, management, and coordination and a medical home as a one stop health care shop. Among the projected cancer care beneficiaries are two synergistic socio-demographic trends: an increase of minority populations, and a widening of the disparities gap, despite current, yet insufficient investments in research.(Hobbs and Stoops 2002) For over a decade, the relationship between cultural competence and health disparities has been well documented.(Brach and Fraser 2000; Betancourt, Green et al. 2003; Goode, Dunne et al. October 2006) Increasingly, developing nations are faced with diseases of the "developed world" and resource limitations rendering many such governments incapable of caring for their people. For example, cancer is the third leading cause of mortality in the Caribbean Region surpassed only by cerebro- and cardiovascular disease.(Phillips, Jacobson et al. 2007) Approximately 50% of cancer mortality occurs in developing countries and 60 to 70% of new cases are projected in those countries by 2020 (Jones et al 2006). In the case of cancer,

one interconnected health system: the community as health seeking beneficiaries, the health workforce as providers of culturally competent care, and the health system as the locus of health services within communities.(Fisher, Burnet et al. 2007) This interconnected system will facilitate what has eluded many cancer health disparities scientists to date: transforming impact ascertainment of health intervention from behavioral outcomes to functional health status. This paradigm shift will result in targeting the community rather than the individual

> COMMUNITY Asset-Driven Participation

> > Transform

**6.1 Creating a culturally competent cancer care workforce: forces of change and** 

Among the plethora of challenges are three forces of change directly affecting developing a cadre of culturally competent cancer care providers: the new primary care practice, the rapidly changing demographics, and cancer as a global chronic disease burden. The "new" primary care practice represents a "back to the future" phenomenon in some instances- the primary care physician's role becomes one of a communicator who empowers, informs, and engages patients in their care.(Fiscella and Epstein 2008) Team-based care requires skills in leadership, management, and coordination and a medical home as a one stop health care shop. Among the projected cancer care beneficiaries are two synergistic socio-demographic trends: an increase of minority populations, and a widening of the disparities gap, despite current, yet insufficient investments in research.(Hobbs and Stoops 2002) For over a decade, the relationship between cultural competence and health disparities has been well documented.(Brach and Fraser 2000; Betancourt, Green et al. 2003; Goode, Dunne et al. October 2006) Increasingly, developing nations are faced with diseases of the "developed world" and resource limitations rendering many such governments incapable of caring for their people. For example, cancer is the third leading cause of mortality in the Caribbean Region surpassed only by cerebro- and cardiovascular disease.(Phillips, Jacobson et al. 2007) Approximately 50% of cancer mortality occurs in developing countries and 60 to 70% of new cases are projected in those countries by 2020 (Jones et al 2006). In the case of cancer,

Fig. 4. Culturally competent community based participatory cancer care.

**CCCBPCC**

HEALTH SYSTEMS Culturally Competent Systems

to benchmark impact.

**opportunities** 

HEALTH WORKFORCE Cultural Competence Training

developing nations lack the resources to provide even the basic components of the cancer care continuum including screening mammography and radiation therapy. While there is a growing visibility regarding each of these three forces of change no comprehensive effort to derive community-based solutions has been undertaken to date.

From a health workforce perspective, efforts to counteract these forces have largely amounted to a number of training courses targeting practicing health care providers, "special" courses or lectures on cultural competence for those still in the pipeline, and research efforts which often last only until the end of the funding period. Exemplary exceptions targeting the practicing health workforce such as the cancer care competency case studies from C-Change are included in this chapter. The Interprofessional Education Collaborative spearheaded by the Association of American Medical Colleges (AAMC), and consisting of the Association of Schools of Public Health, American Association of Colleges of Nursing, American Association of Colleges of Osteopathic Medicine, American Association of Colleges of Pharmacy, American Dental Education Association has recently published a transdisciplinary competency model to guide the education of the represented disciplines with the desired outcome of more holistic frontline practice.(IPEC 2011) This signals an increasing realization that discipline-specific graduates may not adequately perform on today's practice frontline. A more persistent demand is coming from the increasingly culturally diverse consumers of graduate health education: the " is there and app for this" generation is not only calling for a change in instructional delivery, but is also more in tune with its future customers and the global health threats facing them.

#### **6.2 A core set of cultural competencies for medicine and public health**

AAMC and ASPH are engaged in a collaborative partnership to develop a set of core cultural competencies appropriate for medical-, public health students and those in other health-related educational institutions to bolster the delivery of health care services especially to underserved, diverse populations.(Lichtveld 2010) The overarching aims of the initiative were: to illustrate cultural competence as an effective cross over topic area for students in both academic medicine and public health; to demonstrate how cultural competence can advance health disparities research in medical and public health education; and to provided most needed examples of how to incorporate cultural competencies into curricula and practica to graduate more culturally competent practitioners. There are several unique features to this joint effort: there is full agreement from both organizations that the emphasis should be on embedding cultural knowledge, skills, and attitudes medicine and public health education and practice rather than creating separate, standalone courses; The explicit anticipated outcome is a patient-centered approach in a community setting embracing both the customers of medicine and public health in a holistic fashion; the competencies were designed deliberately broad to not only allow for integration and tailoring within the scope of practice but also support pedagogical approaches accommodating the progressive stages of learning. Therefore, the competency set is not intended to be implemented in its entirety giving schools of medicine and public health flexibility in application while providing benchmarks of learning performance.

The competencies are categorized in three domains: knowledge- focusing on educational learning outcomes-, skills- representing practice competencies-, and attitudes. Included in the competency set are bridging competencies, logically linking one domain to the other,

Creating a Sustainable Cancer Workforce: Focus on Disparities and Cultural Competence 421

often incorporating more than one domain. For example, a student's ability to "describe the elements of effective communication with patients, families, communities, peers and colleagues" requires both attaining the requisite knowledge as well as demonstrating the skill to successfully implement the role of communicator. In the context of cancer diagnosis and treatment, patient-physician communication can profoundly influence decision-making and consequently health outcome (Smith, Lichtveld, 2007). For example, recognizing cultural beliefs and practices guides health care providers to negotiate rather than demand a given course of treatment. Successful patient –physician encounters require both interpersonal- as well as instrumental communication (Manfredi et al 2010). Therefore, while *knowledge* about aspects of interpersonal communication such as respect will help make a patient feel more comfortable with the physician, instrumental communication is the dimension which most influences a patient's decision-making regarding cancer treatment

A series of transdisciplinary case studies currently in development will accompany the competencies listed below in Table 4 to demonstrate the translation into learner level-

Patient navigation is an emerging component of the cancer care delivery team and system that offers an innovative solution to decrease cancer health disparities by bridging the chasm between access to and optimal utilization of services through sustainable and culturally relevant mechanisms. Embedding cultural competence in medical education has been a long-standing objective, reinforced by the painful disparity in outcomes that perpetuate excess morbidity and mortality among underserved minority populations (Betancourt 2003; Smedley, Stith et al. 2003; Betancourt 2006; Betancourt 2006). This section will discuss the role of culturally competent patient navigation and cultural competence

There is perhaps no other area in health care in which active patient participation through screening, diagnosis and treatment phases is as important as in cancer care. Cancer treatment is multidisciplinary (radiation, chemotherapy, surgery) and requires the patient, in equal partnership with the oncology provider, to make complex treatment decisions and participation in clinical trials - decisions that can impact survival. Cancer centers are highly specialized and therefore quite distinct from the broadly focused community based medicine environment. Primary care practitioners may be reluctant to actively engage oncology team physicians due to unfamiliarity with cancer treatment approaches, protocols and successful cancer center navigation and therefore unable to provide needed support. Navigators can bridge the gap in cultural competence, health care access and coordination, insurance coverage and continuity, prevention and early

For patients, the navigator operates in two environments- health care system and caring companion and provides "insider" information about system access and navigation and

for example—emphasizing a demonstration of effective communication *skill*s.

specific educational modalities.

**7. Applications in the field** 

training in the era of health reform.

**7.1 Navigation** 

detection and treatment.


Table 4. Cultural competencies for students in medicine and public health.

often incorporating more than one domain. For example, a student's ability to "describe the elements of effective communication with patients, families, communities, peers and colleagues" requires both attaining the requisite knowledge as well as demonstrating the skill to successfully implement the role of communicator. In the context of cancer diagnosis and treatment, patient-physician communication can profoundly influence decision-making and consequently health outcome (Smith, Lichtveld, 2007). For example, recognizing cultural beliefs and practices guides health care providers to negotiate rather than demand a given course of treatment. Successful patient –physician encounters require both interpersonal- as well as instrumental communication (Manfredi et al 2010). Therefore, while *knowledge* about aspects of interpersonal communication such as respect will help make a patient feel more comfortable with the physician, instrumental communication is the dimension which most influences a patient's decision-making regarding cancer treatment for example—emphasizing a demonstration of effective communication *skill*s.

A series of transdisciplinary case studies currently in development will accompany the competencies listed below in Table 4 to demonstrate the translation into learner levelspecific educational modalities.
