Abstract CN03-02: The inclusion of advocates in identifying and addressing provocative topics in cancer disparities and equity research
Authors: Ashing Kimlin Tam 
Published: May 2015

Significance: As the number of cancer survivors grows rapidly, we are confronted with the increasing diversity of the cancer survivor population. Ethnic minority cancer survivors: 1) have more co-occurring illness, 2) are at greater risk for second cancers and metastases, 3) have poor survival, 4) experience unfavorable survivorship outcomes, and 5) have greater behavioral and socioecological risks factors. Still, ethnic minorities comprise 20% of cancer survivors who have been diagnosed within the past five years. Despite increasing representation among cancer survivors and documented poorer outcomes, ethnic minorities are understudied in cancer survivorship research. Hence, we are compelled to ask provocative questions and cultivate best approaches in research and practice for more rapid translation of new knowledge and implementation of interventions to bring cancer health equity and reduce the undue burden of cancer. Further, mounting evidence directs our attention to the social determinants of cancer outcomes. Yet, there are several challenges in examining broad social contexts requiring the inclusion and guidance of survivor-advocates. The lived experiences of survivor-advocates underscore an examination of The Cultural and Socioecological Contexts of Cancer Outcomes to appreciate health outcomes on a macro level. Informed by survivor-advocates and the literature, this Model articulates: Structural Determinants including sociopolitical and demographic context that generate and reinforce social-stratification (e.g., ethnicity/race, gender, age, discrimination, immigration), and socio-economic context (e.g., income, education, social class); and Intermediary Determinants (i.e., cultural, psychosocial, behavioral, environmental, biological, health system contexts). Each context is multidimensional, with multiple accompanying domains, and contributes to shaping health outcomes. Also, on a micro level (individual, family) the inclusion of survivor-advocates can inform implementation science to rapidly move from research idea to efficacy and effectiveness testing to application in practice. Thus, we utilized the Model to address the broad individual and systems level dimensions that impact survivorship outcomes by including survivor-advocates in research to ensure cultural, linguistic and socioecological contexts are infused into the development of a treatment summary and survivorship care plan (TSSCP).

Current Research: We conducted a research study partnered with survivor-advocates to create a TSSCP that is responsive to health risk factors common among those who are medically underserved and at greater risk for second cancers and metastatic disease. The survivor-advocates provided input into cultural (i.e., language, spirituality) and socio-ecological (i.e., stress management) contents of the TSSCP to increase patient centeredness and responsiveness. Survivor-advocates recommended that the TSSCP attend to and document comorbidities and medications; surveillance for primary and secondary cancers and other illnesses. In addition health advisories must include nutrition, exercise and stress management; and quality of life that take into account the importance of community resources and spirituality and responsive to the high levels of socioecological stress in the community.

Summary: The unique contribution in the inclusion of survivor-advocates lie in the fact that these survivors are often socioecologically, culturally and linguistically embedded experts. This presentation will discuss how engaging with survivor-advocates may expand our theoretical paradigm, research questions, and survivor intervention and implementation. Survivor-advocates extend the net of scientific and clinical collaborators and contributors to better understand and effectively address the needs of underserved and underrepresented cancer survivors.

Citation Format: Kimlin Tam Ashing. The inclusion of advocates in identifying and addressing provocative topics in cancer disparities and equity research. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr CN03-02. doi:10.1158/1538-7755.DISP13-CN03-02