CULTURALLY COMPETENT RESEARCH TREATs – Translational Research Ethics: Applied Topics Presented by the Bioethics and Subject Advocacy Program (BSAP) of the Indiana Clinical and Translational Science Institute (CTSI) CULTURALLY COMPETENT RESEARCH SYLK SOTTO, EDD, MBA, MPS ASSISTANT PROFESSOR VICE CHAIR FOR FACULTY AFFAIRS AND DIVERSITY DEPARTMENT OF MEDICINE ssotto@iu.edu Twitter: @drssotto

ssotto@iu.edu Twitter: @drssotto OVERVIEW Define Cultural Competence Present salient issues around cultural competence for researchers Introduce concept of Cultural Humility ssotto@iu.edu Twitter: @drssotto

ssotto@iu.edu Twitter: @drssotto CULTURAL COMPETENCE Awareness of unique, and defining characteristics of the populations for which health professionals provide care and from which they wish to enroll clinical research participants. Understanding the importance of social and cultural influence on patients’ health beliefs and behaviors. 1 O’Brien, R. L., Kosoko‐Lasaki, O., Cook, C. T., Kissell, J., Peak, F., & Williams, E. H. (2006). Self‐assessment of cultural attitudes and competence of clinical investigators to enhance recruitment and participation of minority populations in research. Journal of National Medical Association. 98 (5), 674­682. 2 Betancourt, R. J., Green, A. R., & Ananeth‐Firempong II, O. (2003). Defining cultural competence: A practical framework for addressing racial/ethnic disparities in health and health care. Public Health Reports 118, 293­302. 3 Shiu‐Thronton, S. (2003). Addressing cultural competency in research: Integrating a community‐based participatory research approach. Alcohol Clin Res. 27 (8), 1361­1364 4 Crampton, P., Dowell, A., Parkin, C., & Thompson, C., (2003). Combating effects of racism through a cultural immersion medical education program. Academic Medicine. 78 (6), 595­598. 5 Cook, C. T., Kosoko‐Lasaki, O., & O’Brien, R. (2005) Satisfaction with and perceived cultural competency of healthcare providers: The minority experience. Journal of the National Medical Association. 97 (8), 1078­1087. ssotto@iu.edu Twitter: @drssotto

CULTURAL COMPETENCE IN RESEARCH Cultural competence in research is the ability of researchers and research staff to provide high quality research that takes into account the culture and diversity of a population when developing research ideas, conducting research, and exploring applicability of research findings. ssotto@iu.edu Twitter: @drssotto

VULNERABLE POPULATIONS and MINORITIZED GROUPS Often these populations are exposed to research that is driven by dominant epistemologies, research methodologies, and socio‐cultural lenses that can exacerbate their vulnerability, negating their socio‐cultural reality. ssotto@iu.edu Twitter: @drssotto

WHY CULTURAL COMPETENCY IN RESEARCH? Adaptation of research training would allow investigators to modify or translate traditional study methods, instruments and interventions allowing exploration of new innovative research methods and data collection methods to fit the needs of diverse multicultural populations. ssotto@iu.edu Twitter: @drssotto

CULTURAL COMPETENCE FOR RESEARCHERS (1) effective communication and interaction between researchers and study participants; (2) adequate analysis and interpretation of results as they relate to the patient/population impact; and (3) appropriate engagement in study design and implementation for community/population based research. (4) could help to improve participation of UIR populations in these studies, ensuring that different subgroups in the population are represented proportionally in research studies. ssotto@iu.edu Twitter: @drssotto

CULTURAL COMPETENCY TECHNIQUES interpreter services, recruitment and retention policies, training, coordinating with traditional healers, use of community health workers, culturally competent health promotion, including family/community members, immersion into another culture, and administrative and organizational accommodations. ssotto@iu.edu Twitter: @drssotto

UNDERREPRESENTED IN RESEARCH Willingness to participate in research Myth or reality? Shaw, M. G., Morrell, D. S., Corbie­Smith, G. M., Lowell, A., & Goldsmith, L. A. (2009). Perceptions of pediatric clinical research among African American and Caucasian parents. Journal of the National Medical Association, 101(9), 900­907. ssotto@iu.edu Twitter: @drssotto

ssotto@iu.edu Twitter: @drssotto CCR MODELS Robinson et al. (2007) 1) Increased inclusion of UIR in the design, management, and implementation of medical research studies would help mitigate negative perceptions of the research process, and serve to increase participation among racial/ethnic minorities. Other models include: intercultural sensitivity, intercultural communication, cross-cultural competence ssotto@iu.edu Twitter: @drssotto

ssotto@iu.edu Twitter: @drssotto PPT MODEL Cultural Awareness Cultural Knowledge Cultural Sensitivity Cultural Competence ssotto@iu.edu Twitter: @drssotto

ssotto@iu.edu Twitter: @drssotto PPT MODEL Cultural Awareness Cultural Knowledge The degree of awareness we have about our own cultural background and cultural identity. This helps us to understand the importance of our cultural heritage and that of others, and makes us appreciate the dangers of ethnocentricity. Meaningful contact with people from different ethnic groups can enhance knowledge around their health beliefs and behaviors as well as raise understanding around the problems they face. Papadopoulus et al. ssotto@iu.edu Twitter: @drssotto

ssotto@iu.edu Twitter: @drssotto PPT MODEL Cultural Sensitivity Cultural Competence This entails the crucial development of appropriate interpersonal relationships with our clients. An important element in achieving cultural sensitivity is how professionals view people in their care. The capacity to provide effective healthcare taking into consideration people's cultural beliefs, behaviors and needs. Cultural competence is both a process and an output, and results from the synthesis of knowledge and skills which we acquire during our personal and professional lives and to which we are constantly adding. ssotto@iu.edu Twitter: @drssotto

CCR: AN ETHICAL PERSPECTIVE INFORMED CONSENT FAILURES LACK OF DIVERSITY AMONG PARTICIPANTS AND RESEARCHERS CULTURALLY INSENSITIVE ASSESSMENTS INAPPROPRIATE STUDIES OF MINORITY POPULATION ssotto@iu.edu Twitter: @drssotto

ssotto@iu.edu Twitter: @drssotto CULTURAL HUMILITY It is a process that requires humility as individuals continually engage in self-reflection and self-critique as lifelong learners and reflective practitioners. It is a process that requires humility in how physicians bring into check the power imbalances that exist in the dynamics of physician-patient communication by using patient-focused interviewing and care. And it is a process that requires humility to develop and maintain mutually respectful and dynamic partnerships with communities. Tervalon and Murray –Garcia (1998) ssotto@iu.edu Twitter: @drssotto

Cultural humility and empathy CULTURALLY COMPETENT RESEARCH IN ACTION Culturally Competent Research Research Cultural Competence Cultural humility and empathy ssotto@iu.edu Twitter: @drssotto

ssotto@iu.edu Twitter: @drssotto THANK YOU. ssotto@iu.edu Twitter: @drssotto

BSAP CONSULTATIONS: HTTPS://WWW.INDIANACTSI.ORG/BIOETHICS-ADVOCACY/ TREATs – Translational Research Ethics: Applied Topics Presented by the Bioethics and Subject Advocacy Program (BSAP) of the Indiana Clinical and Translational Science Institute (CTSI) BSAP CONSULTATIONS: HTTPS://WWW.INDIANACTSI.ORG/BIOETHICS-ADVOCACY/ ssotto@iu.edu Twitter: @drssotto