Nueva Vida

Patient-centered outcomes research (PCOR) emphasizes the involvement of patients and other interested stakeholders during study design, implementation, and evaluation. We provide an example of PCOR using “research democracy”—a process in which individuals involved in research (e.g., team members, participants, and advisors) have a vote and a voice in the decisions that are made and the procedures that are used to conduct the research. We describe the Nueva Vida Intervention study and the strategies used to strengthen team management and team cohesion and to utilize team diversity as an asset. We collected data on team engagement through informal observations, direct discussions, and survey assessments. Team members overwhelmingly agreed that using research democracy approaches increased mutual trust and an individual’s level of influence during the study. Identified barriers indicated the importance of effective communication and the challenges with recruitment, while the benefits included a heightened sense of collaboration and a better understanding of the research process. Initial results suggest that team engagement and research democracy approaches are advantageous to conducting an efficient and effective study, thereby improving PCOR and ultimately benefiting the patients and their caregivers.

BackgroundGermline mutations in the BRCA1 and BRCA2 genes account for 20–25 % of inherited breast cancers and about 10 % of all breast cancer cases. Detection of BRCA mutation carriers can lead to therapeutic interventions such as mastectomy, oophorectomy, hormonal prevention therapy, improved screening, and targeted therapies such as PARP-inhibition. We estimate that African Americans and Hispanics are 4–5 times less likely to receive BRCA screening, despite having similar mutation frequencies as non-Jewish Caucasians, who have higher breast cancer mortality. To begin addressing this health disparity, we initiated a nationwide trial of BRCA testing of Latin American women with breast cancer. Patients were recruited through community organizations, clinics, public events, and by mail and Internet. Subjects completed the consent process and questionnaire, and provided a saliva sample by mail or in person. DNA from 120 subjects was used to sequence the entirety of BRCA1 and BRCA2 coding regions and splice sites, and validate pathogenic mutations, with a total material cost of $85/subject. Subjects ranged in age from 23 to 81 years (mean age, 51 years), 6 % had bilateral disease, 57 % were ER/PR+, 23 % HER2+, and 17 % had triple-negative disease.ResultsA total of seven different predicted deleterious mutations were identified, one newly described and the rest rare. In addition, four variants of unknown effect were found.ConclusionsApplication of this strategy on a larger scale could lead to improved cancer care of minority and underserved populations.Electronic supplementary materialThe online version of this article (doi:10.1186/s13742-015-0088-z) contains supplementary material, which is available to authorized users.

The paper analyzes the relationship between the Cuban government and the Catholic Church after the victory of the Cuban Revolution in 1959. The struggle of Fidel Castro and his fellow rebels against the Batista dictatorship was supported by a significant number of priests and catholic faithfuls. Three days after the victory of the Ejercito Rebelde, a pastoral letter with the title of Vida Nueva (New Life) was issued by Mons. Enrique Pérez Serantes, the primate of Cuba. This letter is a main source for the interpretation of the Church and State relations at the beginning of the political changes. The analysis of the letter helps to understand the attitude of the Catholic Church toward the new political system and it’s leader, Fidel Castro. After the victory of the revolution, despite the earlier promises, the new Cuban State vigorously opposed the Catholic Church. The new goverment began to weaken its institutional system, and aspired to the elimination of these institutions in some fields.