**7.1 Navigation**

420 Cancer Prevention – From Mechanisms to Translational Benefits

 **KNOWLEDGE SKILLS ATTITUDES** 

competence.

Identify one's own assets and learning needs related to cultural

Incorporate culture as a key component of patient, family, and

Integrate patients/ families/ communities cultural perspective(s) in developing treatment/ interventions.

Apply (community) constituent/ patient ‐centered principles to earn

Conduct culturally appropriate risk and asset assessment, management, and communication with patients

community history.

trust and credibility.

and populations.

Contribute to the planning, implementation, and evaluation of culturally competent interventions.

Communicate in a culturally competent manner with patients, families, and communities.

Employ self‐reflection to evaluate the impact of one's practice.

Work effectively in a transdisciplinary setting/team.

Demonstrate shared decision‐

Analyze illness conditions and health outcomes of concern at the patient and community level.

Engage community partners in actions which promote a healthy environment and healthy behaviors.

Communicate with colleagues,

Establish equitable partnerships with local health departments, faith and community‐based organizations, and leaders to develop culturally appropriate outreach and interventions.

patients, families, and communities about health disparities and health care

disparities.

making.

Demonstrate willingness to apply the principles of cultural

Appreciate how cultural competence contributes to the practice of medicine and

Appreciate that becoming culturally competent involves life‐long learning.

Demonstrate willingness to assess the impact of one's own culture, assumptions, stereotypes, and biases on the ability to provide culturally competent care and service.

Demonstrate willingness to explore cultural elements and aspects that influence decision making by patients, self, and

Demonstrate willingness to collaborate to overcome linguistic and literacy challenges in the clinical and community encounter (note this could be an example of a bridging comp).

Appreciate the influence of institutional culture on learning

content, style, and opportunities of professional training programs.

colleagues.

competence.

public health.

Define the dimensions of culture to include language, sexual orientation, gender, age, race, ethnicity, disability, beliefs, socio‐economic status, and educational attainment.

Differentiate health, health care, health care systems, and health disparities,

Identify cultural factors that contribute to overall health and wellness.

Describe the contributions of culture and resiliency to positive health

Examine factors that contribute to health disparities, particularly social, economic, environmental, health

Identify health disparities that exist at the local, state, regional, national and

Recognize that cultural competence alone does not address health care

Describe the elements of effective communication with patients, families, communities, peers and colleagues.

Describe strategies to communicate with limited English proficient patients and communities, such as working with trained medical interpreters or

Describe the role of community engagement in healthcare and

Assess the impact of acculturation and immigration on healthcare and

Articulate cultural humility, cultural diversity, and cultural competence and their roles in ongoing professional

Describe the values and limitations of evidence-based literature on understanding the health of individuals and communities

Articulate the roles and functions of local health departments, community partners and organizations.

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

translated materials.

wellness.

wellness.

development.

systems, and access.

global level.

disparities.

outcomes.

*At the completion of the program of study, (medical and public health) students will be able to* 

> 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 detection and treatment.

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

Creating a Sustainable Cancer Workforce: Focus on Disparities and Cultural Competence 423

support through grant funding to establish medical homes for Medicaid patients with chronic diseases, community based, interdisciplinary teams to provide support services to primary care practices and health care provider consortiums to coordinate and integrate health care services for low income under- and uninsured populations which collectively will enable comprehensive, multidisciplinary case management. Navigator integration into the PPACA infrastructure will create sustainable changes in the health care system and promote health behavior modification. Most importantly, it establishes a matrix structured platform that will reward innovation in streamlining health care delivery, promote the development of fiscally accountable and efficient health care delivery and in the mid and

Substantive training relevant to culturally competent communication in schools of medicine, nursing, dentistry, public health and social work has been an elusive goal, awaiting, perhaps, consensus agreement on competencies as a framework upon which to build an evidence based curriculum (Beach, Price et al. 2005; Lichtveld, Boulton et al. 2008) Yet, health care preparation in all disciplines acknowledges and emphasizes shared decision making as the effective method by which patients receive the best care and, long term, the best outcomes (O'Connor, Wennberg et al. 2007; King, Eckman et al. 2011) Why then is there a reluctance to launch curricula in cultural competence – a fundamental component of

It is generally acknowledged that the effectiveness of health care provider communication is dependent on the health literacy of the patient and the ability of the provider to a.) recognize the level of health literacy and b.) tailor the communication appropriately (Dewalt, Berkman et al. 2004; Weiss, May et al. 2005) There are well-established health literacy tools to guide providers in tailoring communication. Understanding health literacy and the tools available for assessment is a key element to successful training in cultural competency (Shaw, Huebner et al. 2009) Moreover, knowledge of health literacy and its importance in achieving the level of communication that results in shared decision making is a "prerequisite" for embracing cultural competence. A recent study by Price-Haywood, et al. (2010) combined the evaluation of special physician training by a measure of effectiveness – cancer screening behavior – in patients stratified by their health literacy score. (Price-Haywood, Roth et al. 2010). The model was colon cancer screening, a preventive behavior that is an excellent paradigm for shared decision making since there are several acceptable options for screening. The physician training based on attention to health literacy alone was successful measured by surrogate-reported progressive change in physician behavior and communication during the study period. An important finding, however, was that the low health literacy patients did not feel satisfied with the communication of risk reduction with screening, though the "trained" physicians rated their communication as effective (Price-Haywood, Harden-Barrios et al. 2011) Moreover, the early results demonstrate that patient screening behavior among the low health literacy patients had not changed at 1 year of follow-up. The investigators acknowledge the need to enrich the physician training based

on the racial, ethnic, and cultural characteristics of the patient population.

The lack of linkage between training in communication and positive changes in patient outcomes seems to plague educators, psychologists, and health service researchers

long term the resurrecting a "healthy America".

communication aimed at shared decision making?

**7.2 Embedding cultural competence in cancer care education** 

advocacy while simultaneously building trust that will extend to the larger health care system. Navigators who are representative community members who understand the culture in the patient and provider communities and function within a biospychosocial theoretical framework (Engel 1977; King, Miranda et al. 2010) are critical in facilitating effective bidirectional patient provider communication and, most importantly, treatment *partnership.*(Carroll, Lardiere et al. 2010)

Patient perception of health care system and services access directly correlate with utilization. Navigators who know the local environment can navigate financial/insurance issues, cultural beliefs and language barriers, childcare and transportation issues, identification of a medical home and provide the necessary patient education and support to assure healthcare access and continuity of care. (Dohan and Schrag 2005) Utilization of screening and early detection has improved but remains problematic in rural and minority populations. This is the point within the health care delivery system at which the navigator can have the highest, sustainable community impact. Patient navigation is critical within the Federally Qualified Health Centers which provide services to high needs populations. Navigators connect patients with education, outreach, screening, diagnosis and treatment resources and provide advice tailored to individual patient needs. Studies to evaluate navigation effectiveness are underway.

#### **7.1.1 Evaluating navigation effectiveness**

Navigation has improved survival via detection of early stage disease, better follow-up of abnormal screening and diagnostic tests through reduction in the time interval between tests, improved utilization and treatment adherence to multidisciplinary cancer treatment regimens and clinical trial participation. Navigation has also resulted in improved patient satisfaction with respect to health care delivery, decreased anxiety as well as doctor and waiting time concerns. (Guadagnolo, Dohan et al. 2011) Patient outcome evaluation is critical for assessing the effectiveness of navigation. Most efforts have targeted screening and diagnosis aspects of cancer care i.e. number of people served, screening tests and biopsies performed, cancers diagnosed etc. However, identification of successful navigation strategies that result in *sustained* improvements in access, utilization and health behaviors, requires the identification and utilization of tailored metrics that better qualitatively and quantitatively evaluate quality of care from the system, provider and patient perspectives. Candidate treatment tracking metrics include receipt of appropriate radiation and/or adjuvant chemotherapy after cancer surgery, guideline concordant treatment rates and adherence to treatment regimens, care coordination (provider notification, discussion at multidisciplinary tumor conference, receipt and type of ancillary services, medication and devices. Patient reported care metrics could include satisfaction with cancer related care and navigation, functional health status and symptom burden, coping skills and co-morbidity, quality of life during treatment and palliative care.

#### **7.1.2 Financing navigation**

The Patient Protection and Affordable Care Act (PPACA) addressed 4 key issues: prevention and early detection, access and coordination, insurance coverage and continuity and diversity and cultural competency. The PPACA provided infrastructure development

advocacy while simultaneously building trust that will extend to the larger health care system. Navigators who are representative community members who understand the culture in the patient and provider communities and function within a biospychosocial theoretical framework (Engel 1977; King, Miranda et al. 2010) are critical in facilitating effective bidirectional patient provider communication and, most importantly, treatment

Patient perception of health care system and services access directly correlate with utilization. Navigators who know the local environment can navigate financial/insurance issues, cultural beliefs and language barriers, childcare and transportation issues, identification of a medical home and provide the necessary patient education and support to assure healthcare access and continuity of care. (Dohan and Schrag 2005) Utilization of screening and early detection has improved but remains problematic in rural and minority populations. This is the point within the health care delivery system at which the navigator can have the highest, sustainable community impact. Patient navigation is critical within the Federally Qualified Health Centers which provide services to high needs populations. Navigators connect patients with education, outreach, screening, diagnosis and treatment resources and provide advice tailored to individual patient needs. Studies to evaluate

Navigation has improved survival via detection of early stage disease, better follow-up of abnormal screening and diagnostic tests through reduction in the time interval between tests, improved utilization and treatment adherence to multidisciplinary cancer treatment regimens and clinical trial participation. Navigation has also resulted in improved patient satisfaction with respect to health care delivery, decreased anxiety as well as doctor and waiting time concerns. (Guadagnolo, Dohan et al. 2011) Patient outcome evaluation is critical for assessing the effectiveness of navigation. Most efforts have targeted screening and diagnosis aspects of cancer care i.e. number of people served, screening tests and biopsies performed, cancers diagnosed etc. However, identification of successful navigation strategies that result in *sustained* improvements in access, utilization and health behaviors, requires the identification and utilization of tailored metrics that better qualitatively and quantitatively evaluate quality of care from the system, provider and patient perspectives. Candidate treatment tracking metrics include receipt of appropriate radiation and/or adjuvant chemotherapy after cancer surgery, guideline concordant treatment rates and adherence to treatment regimens, care coordination (provider notification, discussion at multidisciplinary tumor conference, receipt and type of ancillary services, medication and devices. Patient reported care metrics could include satisfaction with cancer related care and navigation, functional health status and symptom burden, coping skills and co-morbidity,

The Patient Protection and Affordable Care Act (PPACA) addressed 4 key issues: prevention and early detection, access and coordination, insurance coverage and continuity and diversity and cultural competency. The PPACA provided infrastructure development

*partnership.*(Carroll, Lardiere et al. 2010)

navigation effectiveness are underway.

**7.1.1 Evaluating navigation effectiveness** 

quality of life during treatment and palliative care.

**7.1.2 Financing navigation** 

support through grant funding to establish medical homes for Medicaid patients with chronic diseases, community based, interdisciplinary teams to provide support services to primary care practices and health care provider consortiums to coordinate and integrate health care services for low income under- and uninsured populations which collectively will enable comprehensive, multidisciplinary case management. Navigator integration into the PPACA infrastructure will create sustainable changes in the health care system and promote health behavior modification. Most importantly, it establishes a matrix structured platform that will reward innovation in streamlining health care delivery, promote the development of fiscally accountable and efficient health care delivery and in the mid and long term the resurrecting a "healthy America".

#### **7.2 Embedding cultural competence in cancer care education**

Substantive training relevant to culturally competent communication in schools of medicine, nursing, dentistry, public health and social work has been an elusive goal, awaiting, perhaps, consensus agreement on competencies as a framework upon which to build an evidence based curriculum (Beach, Price et al. 2005; Lichtveld, Boulton et al. 2008) Yet, health care preparation in all disciplines acknowledges and emphasizes shared decision making as the effective method by which patients receive the best care and, long term, the best outcomes (O'Connor, Wennberg et al. 2007; King, Eckman et al. 2011) Why then is there a reluctance to launch curricula in cultural competence – a fundamental component of communication aimed at shared decision making?

It is generally acknowledged that the effectiveness of health care provider communication is dependent on the health literacy of the patient and the ability of the provider to a.) recognize the level of health literacy and b.) tailor the communication appropriately (Dewalt, Berkman et al. 2004; Weiss, May et al. 2005) There are well-established health literacy tools to guide providers in tailoring communication. Understanding health literacy and the tools available for assessment is a key element to successful training in cultural competency (Shaw, Huebner et al. 2009) Moreover, knowledge of health literacy and its importance in achieving the level of communication that results in shared decision making is a "prerequisite" for embracing cultural competence. A recent study by Price-Haywood, et al. (2010) combined the evaluation of special physician training by a measure of effectiveness – cancer screening behavior – in patients stratified by their health literacy score. (Price-Haywood, Roth et al. 2010). The model was colon cancer screening, a preventive behavior that is an excellent paradigm for shared decision making since there are several acceptable options for screening. The physician training based on attention to health literacy alone was successful measured by surrogate-reported progressive change in physician behavior and communication during the study period. An important finding, however, was that the low health literacy patients did not feel satisfied with the communication of risk reduction with screening, though the "trained" physicians rated their communication as effective (Price-Haywood, Harden-Barrios et al. 2011) Moreover, the early results demonstrate that patient screening behavior among the low health literacy patients had not changed at 1 year of follow-up. The investigators acknowledge the need to enrich the physician training based on the racial, ethnic, and cultural characteristics of the patient population.

The lack of linkage between training in communication and positive changes in patient outcomes seems to plague educators, psychologists, and health service researchers

Creating a Sustainable Cancer Workforce: Focus on Disparities and Cultural Competence 425

**About C-Change:** The vision/mission of C-Change is to eliminate cancer as a major public health problem at the earliest possible time by leveraging the expertise and resources of its members. C-Change is a 501(c)3 organization comprised of leaders from public, private, and not-for-profit organizations. The organization convenes multi-sector leaders in the cancer community to address issues that we cannot affect alone. For more information about C-

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**9. References** 

(Betancourt 2010; Lie, Lee-Rey et al. 2011) Ineffective curricula, as measured by positive changes in health outcome, thus far appear to be common to both health literacy and cultural competence training. Despite academic "longing", there has not been evidence based tools that can guide health care workers to influence health behavior in a manner that improves outcomes. The literature is rife with "assessments", but outcome thus far belies success.

Nevertheless, some ongoing efforts are encouraging. Lichtveld and colleagues are planning to build a curriculum based on healthcare provider competencies. The 'competencies' will provide the metrics to measure the didactic effectiveness of the curriculum. A second order of assessment will determine linkage between health outcomes and provider/learner achievement. Price-Haywood proposes a physician practice guide and didactic curriculum built on self-expressed needs and expectations of the target population obtained through analysis of information obtained from focus groups of various health literacy.

What is most encouraging is the movement from assessment to plans for action and measurement of health outcomes. (Chun 2010; Echeverri, Brookover et al. 2010; Kamaka 2010; Wilkerson, Fung et al. 2010; Crenshaw, Shewchuk et al. 2011) These evolving tools will enrich the health care provider and enhance the relationship between diverse patients and the health care system. The next five years should be exciting as these tools, guides, and curricula emerge. Today, however, health care providers remain confronted by their ineffectiveness in normalizing the disparate outcomes and their impotence in fostering better health behaviors among their patients. What can the 2012 graduate from medical school, dental school, nursing school, pharmacy school and school of public health do to optimize communication and shared decision making? (Kumagai and Lypson 2009) As we enter the era of "team care" the challenge intensifies because responsibility may become diffuse. The team leader should be the primary care giver with the appropriate knowledge base. The team leader should assess and define the patient's knowledge base and then – and only then – involve the appropriate team members to work with the patient. The team leader should begin by asking the patient to ask any questions and to speak his understanding of his condition and the advice he has received. Often, the patient is or should be accompanied by family or friends who will play an important role in the shared decision making. These principles are fundamental to all courses teaching history, physical examination, and medical decision making. Our professional schools should reinforce the fundamental didactics while preparing for the enhancements which will come from ongoing research into more effective, more focused communication and more elegant science that will combine to contribute to the elimination of outcome disparity.
