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Community engagement (CE) is critical for advancing health equity and a key approach for promoting inclusive clinical and translational science. However, it requires a workforce trained to effectively design, implement, and evaluate health promotion and improvement strategies through meaningful collaboration with community members. This paper presents an approach for designing CE curricula for research, education, clinical care, and public health learners. A general pedagogical framework is presented to support curriculum development with the inclusion of community members as facilitators or faculty. The overall goal of the curriculum is envisioned as enabling learners to effectively demonstrate the principles of CE in working with community members on issues of concern to communities to promote health and well-being. We highlight transformations needed for the commonly used critical service-learning model and the importance of faculty well-versed in CE. Courses may include didactics and practicums with well-defined objectives and evaluation components. Because of the importance of building and maintaining relationships in CE, a preparatory phase is recommended prior to experiential learning, which should be guided and designed to include debriefing and reflective learning. Depending on the scope of the course, evaluation should include community perspectives on the experience.
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Precision medicine envisions a future of effective diagnosis, treatment, and prevention grounded in precise understandings of the genetic and environmental determinants of disease. Given that the original genome-wide association studies represented a predominately European White population, and that diversity in genomic studies must account for genetic variation both within and across racial categories, new research studies are at a heightened risk for inadequate representation. Currently biological samples are being made available for sequencing in biobanks across the USA, but the diversity of those samples is unknown. The aims of this study were to describe the types of recruitment and enrollment materials used by US biobanks and the diversity of the samples contained within their collection. Biobank websites and brochures were evaluated for reading level, health literacy, and factors known to encourage the recruitment of minorities, such as showing pictures of diverse populations. Biobank managers were surveyed by mail on the methods and materials used for enrollment, recruitment, consent, and the self-reported race/ethnicity of biobank participants. From 51 US biobanks (68% response rate), recruitment and enrollment materials were in English only, and most of the websites and brochures exceeded a fifth-grade reading level. When compared to the 2015 US Census, self-reported race/ethnicity of participants was not significantly different for Whites (61%) and blacks (13%). The percentages were significantly lower for Hispanics and Latinos (18 vs. 7%, p = 0.00) and Hawaiian/Pacific Islanders (0.2 vs. 0.01%; p = 0.01) and higher for Asians (13 vs. 5%, p = 0.01). Materials for recruitment predominantly in English may limit participation by underrepresented populations.
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A health-care workforce representative of our nation's diversity is a health and research priority. Although racial and ethnic minorities represent 37% of Americans, they comprise only 16% of the nursing workforce. The purpose of this study was to examine the effect of state legislation on minority recruitment to nursing. Using data from the National Conference of State Legislatures, American Association of Colleges of Nursing, and U.S. census, we compared minority enrollment in baccalaureate nursing programs of states (Texas, Virginia, Michigan, California, Florida, Connecticut, and Arkansas) before and 3 years after enacting legislation with geographically adjacent states without legislation. Data were analyzed using descriptive and chi-square statistics. Following legislation, Arkansas (13.8%-24.5%), California (3.3%-5.4%), and Michigan (8.0%-10.0%) significantly increased enrollment of Blacks, and Florida (11.8%-15.4%) and Texas (11.2%-13.9%) significantly increased enrollment of Hispanic baccalaureate nursing students. States that tied legislation to funding, encouragement, and reimbursement had larger enrollment gains and greater minority representation.
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Diversidad Cultural , Bachillerato en Enfermería/tendencias , Fuerza Laboral en Salud/legislación & jurisprudencia , Grupos Minoritarios/estadística & datos numéricos , Personal de Enfermería/provisión & distribución , Arkansas , California , Connecticut , Bases de Datos Factuales , Femenino , Florida , Humanos , Masculino , Michigan , Grupos Raciales/estadística & datos numéricos , Reproducibilidad de los Resultados , Estudiantes de Enfermería/estadística & datos numéricos , Texas , VirginiaRESUMEN
Achieving equitable minority representation in genomic biobanking is one of the most difficult challenges faced by researchers today. Capacity building--a framework for research that includes collaborations and on-going engagement--can be used to help researchers, clinicians and communities better understand the process, utility, and clinical application of genomic science. The purpose of this exploratory descriptive study was to examine factors that influence the decision to participate in genomic research, and identify essential components of capacity building with a community at risk of being under-represented in biobanks. Results of focus groups conducted in Central Harlem with 46 participants were analyzed by a collaborative team of community and academic investigators using content analysis and AtlisTi. Key themes identified were: (1) the potential contribution of biobanking to individual and community health, for example the effect of the environment on health, (2) the societal context of the science, such as DNA criminal databases and paternity testing, that may affect the decision to participate, and (3) the researchers' commitment to community health as an outcome of capacity building. These key factors can contribute to achieving equity in biobank participation, and guide genetic specialists in biobank planning and implementation.
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Bancos de Muestras Biológicas , Creación de Capacidad , Investigación Participativa Basada en la Comunidad , Investigación Genética , Adolescente , Adulto , Anciano , Grupos Focales , Genómica , Humanos , Persona de Mediana Edad , New York , Adulto JovenRESUMEN
Current strategies for combating obesity include recent federal legislation mandating calorie count postings in chain restaurants. This study describes the current practice of menu board calorie postings in a low-income urban neighborhood, identifies the extent to which current practice complies with existing policy, and evaluates the practical utility of menu boards to consumers. We conclude that although most postings were legally compliant, they did not demonstrate utility. Menu postings for individual servings are easily understood, but complex math skills are needed to interpret meals designed to serve more than one person. In some items, calories doubled depending on flavor and the calorie posting did not give enough information to make healthier selections. We identified specific strategies to improve practical utility and provide recommendations for policy implementation.
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Información de Salud al Consumidor/métodos , Ingestión de Energía , Etiquetado de Alimentos/normas , Adhesión a Directriz , Pobreza , Restaurantes/normas , Población Urbana , Etiquetado de Alimentos/legislación & jurisprudencia , Guías como Asunto , Humanos , Ciudad de Nueva York , Restaurantes/legislación & jurisprudencia , Estados Unidos , United States Food and Drug AdministrationRESUMEN
PURPOSE/OBJECTIVES: To develop and assess the reliability and validity of an observational instrument, the Process and Quality of Informed Consent (P-QIC). DESIGN: A pilot study of the psychometrics of a tool designed to measure the quality and process of the informed consent encounter in clinical research. The study used professionally filmed, simulated consent encounters designed to vary in process and quality. SETTING: A major urban teaching hospital in the northeastern region of the United States. SAMPLE: 63 students enrolled in health-related programs participated in psychometric testing, 16 students participated in test-retest reliability, and 5 investigator-participant dyads were observed for the actual consent encounters. METHODS: For reliability and validity testing, students watched and rated videotaped simulations of four consent encounters intentionally varied in process and content and rated them with the proposed instrument. Test-retest reliability was established by raters watching the videotaped simulations twice. Inter-rater reliability was demonstrated by two simultaneous but independent raters observing an actual consent encounter. MAIN RESEARCH VARIABLES: The essential elements of information and communication for informed consent. FINDINGS: The initial testing of the P-QIC demonstrated reliable and valid psychometric properties in both the simulated standardized consent encounters and actual consent encounters in the hospital setting. CONCLUSIONS: The P-QIC is an easy-to-use observational tool that provides a quick assessment of the areas of strength and areas that need improvement in a consent encounter. It can be used in the initial trainings of new investigators or consent administrators and in ongoing programs of improvement for informed consent. IMPLICATIONS FOR NURSING: The development of a validated observational instrument will allow investigators to assess the consent process more accurately and evaluate strategies designed to improve it.
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Investigación Biomédica , Consentimiento Informado/normas , Humanos , Proyectos Piloto , Psicometría , Reproducibilidad de los ResultadosRESUMEN
Although collaborative research across sites is essential to increase the statistical power and generalizability of research findings, the need to undergo multiple institutional review board (IRB) reviews is a challenge. The purposes of this paper are to describe changes in the IRB submission process in 2 national multisite studies before and after the implementation of the Health Information Portability and Accountability Act (HIPAA) Privacy rule (2002 and 2008) and to discuss implications for policy and practice related to human subjects research. In the second study, there was a shorter mean approval time and reduced variability in the decision about the level of review, the mean number of pages per application doubled, and an increased proportion of IRBs required conflict of interest and data use agreements. Possible approaches to further enhance the efficiency and streamlining of the research review process are suggested.
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Comités de Ética en Investigación/organización & administración , Health Insurance Portability and Accountability Act/organización & administración , Experimentación Humana , Estudios Multicéntricos como Asunto , Investigación en Enfermería/organización & administración , Análisis de Varianza , Distribución de Chi-Cuadrado , Conflicto de Intereses/legislación & jurisprudencia , Recolección de Datos/ética , Recolección de Datos/legislación & jurisprudencia , Interpretación Estadística de Datos , Eficiencia Organizacional , Regulación Gubernamental , Experimentación Humana/ética , Experimentación Humana/legislación & jurisprudencia , Humanos , Consentimiento Informado/ética , Consentimiento Informado/legislación & jurisprudencia , Estudios Multicéntricos como Asunto/ética , Estudios Multicéntricos como Asunto/legislación & jurisprudencia , Estudios Multicéntricos como Asunto/normas , Investigación en Enfermería/ética , Innovación Organizacional , Objetivos Organizacionales , Proyectos de Investigación/legislación & jurisprudencia , Factores de Tiempo , Estados Unidos , United States Office of Research Integrity/organización & administraciónRESUMEN
PURPOSE: The aims for this paper are to summarize the current state of disparities in clinical research participation, discuss regulatory and interpersonal causes for these disparities, and to suggest an approach to address this problem by standardized training for consent administrators. ORGANIZING CONSTRUCT: A program based on the Precede-Proceed model for training consent administrators is proposed and described. CONCLUSIONS: The current process for informed consent for research is unstandardized and inadequate, and may contribute to racial and ethnic disparities. Researchers are urged to consider a formal training program for members of their research teams who will be obtaining participants' consent. CLINICAL RELEVANCE: An educational program for consent administrators may help to reduce disparities in research participation by improving communication between research staff and potential participants.
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Enfermeras y Enfermeros , Investigación en Enfermería/estadística & datos numéricos , Investigación en Enfermería/normas , Enseñanza , Comunicación , Países en Desarrollo , Humanos , Relaciones Enfermero-PacienteRESUMEN
This article proposes a new paradigm for nurse-researchers to strengthen communication with participants, investigators, and the community in clinical trials. The author reviews the current state of HIV vaccine development in response to the human and fiscal cost of the HIV epidemic, both in the United States and globally. A translational model is proposed for restructuring the process by which participants in HIV trials are recruited and the results disseminated. Finally, it is proposed that nurses should play a unique and essential role in implementing this new model, advocating for individuals, strengthening societal trust, and fostering equity.