From Particularities to Context: Refining Our Thinking on Illness Narratives.

This paper examines how illness narratives are used in medical education and their implications for clinicians' thinking and care of patients. Ideally, collecting and reading illness narratives can enhance clinicians' sensitivity and contextual thinking. And yet these narratives have become part of institutionalizing cultural competency requirements in ways that tend to favor standardization. Stereotyping and reductionistic thinking can result from these pedagogic approaches and obscure structural inequities. We end by asking how we might best teach and read illness narratives to fulfill the ethical obligations of listening and asking more informative clinical interview questions that can better meet the needs of patients and the community

Native Hawaiian Voices: Enhancing the Role of Cultural Values in Community Based Participatory Research

Following the goals of Community Based Participatory Research (CBPR), this paper describes how Native Hawaiian values emerged as a methodology for the conduct of a study with Native Hawaiians residing in Southern California. The equitable placing of community values side by side with scientific values show that community concepts can parallel and extend CBPR premises and are more than a variable to be added in the analysis. The community partners, whose voices guide this paper, introduced the values associated with the concepts of “aloha,” “mālama,” “maihilahila,” “na„auao,” and “ano ano hua.” These concepts were employed and maintained throughout the study that assessed diet, obesity, and psychosocial factors related to food and nutrition as a cancer prevention method. We describe and examine these values in light of persistent challenges in CBPR; ensuring that the topic is a community driven issue, fair representation and data dissemination. We argue that Native Hawaiian values are touchstones that intersect in important ways with the goals of CBPR – equality, respecting each other‟s strengths and the elimination of health disparities for future generations

Community engagement practices at research centers in U.S. minority institutions: Priority populations and innovative approaches to advancing health disparities research

This paper details U.S. Research Centers in Minority Institutions (RCMI) Community Engagement Cores (CECs): (1) unique and cross-cutting components, focus areas, specific aims, and target populations; and (2) approaches utilized to build or sustain trust towards community participation in research. A mixed-method data collection approach was employed for this cross-sectional study of current or previously funded RCMIs. A total of 18 of the 25 institutions spanning 13 U.S. states and territories participated. CEC specific aims were to support community engaged research (94%); to translate and disseminate research findings (88%); to develop partnerships (82%); and to build capacity around community research (71%). Four open-ended questions, qualitative analysis, and comparison of the categories led to the emergence of two supporting themes: (1) establishing trust between the community-academic collaborators and within the community and (2) building collaborative relationships. An overarching theme, building community together through trust and meaningful collaborations, emerged from the supporting themes and subthemes. The RCMI institutions and their CECs serve as models to circumvent the historical and current challenges to research in communities disproportionately affected by health disparities. Lessons learned from these cores may help other institutions who want to build community trust in and capacities for research that addresses community-related health concerns

Fludarabine, cytarabine, granulocyte colony-stimulating factor, and idarubicin with gemtuzumab ozogamicin improves event-free survival in younger patients with newly diagnosed aml and overall survival in patients with npm1 and flt3 mutations

Purpose To determine the optimal induction chemotherapy regimen for younger adults with newly diagnosed AML without known adverse risk cytogenetics. Patients and Methods One thousand thirty-three patients were randomly assigned to intensified (fludarabine, cytarabine, granulocyte colony-stimulating factor, and idarubicin [FLAG-Ida]) or standard (daunorubicin and Ara-C [DA]) induction chemotherapy, with one or two doses of gemtuzumab ozogamicin (GO). The primary end point was overall survival (OS). Results There was no difference in remission rate after two courses between FLAG-Ida + GO and DA + GO (complete remission [CR] + CR with incomplete hematologic recovery 93% v 91%) or in day 60 mortality (4.3% v 4.6%). There was no difference in OS (66% v 63%; P = .41); however, the risk of relapse was lower with FLAG-Ida + GO (24% v 41%; P < .001) and 3-year event-free survival was higher (57% v 45%; P < .001). In patients with an NPM1 mutation (30%), 3-year OS was significantly higher with FLAG-Ida + GO (82% v 64%; P = .005). NPM1 measurable residual disease (MRD) clearance was also greater, with 88% versus 77% becoming MRD-negative in peripheral blood after cycle 2 (P = .02). Three-year OS was also higher in patients with a FLT3 mutation (64% v 54%; P = .047). Fewer transplants were performed in patients receiving FLAG-Ida + GO (238 v 278; P = .02). There was no difference in outcome according to the number of GO doses, although NPM1 MRD clearance was higher with two doses in the DA arm. Patients with core binding factor AML treated with DA and one dose of GO had a 3-year OS of 96% with no survival benefit from FLAG-Ida + GO. Conclusion Overall, FLAG-Ida + GO significantly reduced relapse without improving OS. However, exploratory analyses show that patients with NPM1 and FLT3 mutations had substantial improvements in OS. By contrast, in patients with core binding factor AML, outcomes were excellent with DA + GO with no FLAG-Ida benefit

Cancer

Previous work in the anthropology of cancer often examined causes, risks, and medical, familial, and embodied relationships created by the disease. Recent writing has expanded that focus, attending to cancer as a “total social fact” ( Jain 2013 ) and dissecting the landscape of “carcinogenic relationships” ( Livingston 2012 ). Cancer-driven relationships become subjectively real through individual suffering, stigma, and inequality. This article traces concepts developed from a primarily US-centered discourse to a global cancer discourse, including cancer-related issues continuing to raise concern such as stigma, narrative moments of critical reflection on the dominance of biomedicine, and processes by which individuals and communities manage inadequate access to biomedical technologies. Beyond the medical relations and politics of cancer, this article considers the ways in which ethnography addresses local moral worlds and differences that come to matter in attending to the disease, the person, and consequent social and material relations