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1.
Med Care ; 58(6): 497-503, 2020 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-32412941

RESUMEN

BACKGROUND: Rates of low birthweight and prematurity vary 2-fold across states in the United States, with increased rates among states with higher concentrations of racial minorities. Medicaid expansion may serve as a mechanism to reduce geographic variation within states that expanded, by improving health and access to care for vulnerable populations. OBJECTIVE: The objective of this study was to identify the association of Medicaid expansion with changes in county-level geographic variation in rates of low birthweight and preterm births, overall and stratified by race/ethnicity. RESEARCH DESIGN: We compared changes in the coefficient of variation and the ratio of the 80th-to-20th percentiles using bootstrap samples (n=1000) of counties drawn separately for all births and for white, black, and Hispanic births, separately. MEASURES: County-level rates of low birthweight and preterm birth. RESULTS: Before Medicaid expansion, counties in expansion states were concentrated among quintiles with lower rates of adverse birth outcomes and counties in nonexpansion states were concentrated among quintiles with higher rates. In expansion states, county-level variation, measured by the coefficient of variation, declined for both outcomes among all racial/ethnic categories. In nonexpansion states, geographic variation reduced for both outcomes among Hispanic births and for low birthweight among white births, but increased for both outcomes among black births. CONCLUSIONS: The decrease in county-level variation in adverse birth outcomes among expansion states suggests improved equity in these states. Further reduction in geographic variation will depend largely on policies or interventions that reduce racial disparities in states that did and did not expand Medicaid.

2.
Med Care ; 2020 Feb 07.
Artículo en Inglés | MEDLINE | ID: mdl-32040039

RESUMEN

BACKGROUND: Rates of low-birth weight and prematurity vary 2-fold across states in the United States, with increased rates among states with higher concentrations of racial minorities. Medicaid expansion may serve as a mechanism to reduce geographic variation within states that expanded, by improving health and access to care for vulnerable populations. OBJECTIVE: The objective of this study was to identify the association of Medicaid expansion with changes in county-level geographic variation in rates of low-birth weight and preterm births, overall and stratified by race/ethnicity. RESEARCH DESIGN: We compared changes in the coefficient of variation and the ratio of the 80th-to-20th percentiles using bootstrap samples (n=1000) of counties drawn separately for all births and for white, black, and Hispanic births, separately. MEASURES: County-level rates of low-birth weight and preterm birth. RESULTS: Before Medicaid expansion, counties in expansion states were concentrated among quintiles with lower rates of adverse birth outcomes and counties in nonexpansion states were concentrated among quintiles with higher rates. In expansion states, county-level variation, measured by the coefficient of variation, declined for both outcomes among all racial/ethnic categories. In nonexpansion states, geographic variation reduced for both outcomes among Hispanic births and for low-birth weight among white births, but increased for both outcomes among black births. CONCLUSIONS: The decrease in county-level variation in adverse birth outcomes among expansion states suggests improved equity in these states. Further reduction in geographic variation will depend largely on policies or interventions that reduce racial disparities in states that did and did not expand Medicaid.

3.
Transgend Health ; 4(1): 280-286, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31656857

RESUMEN

Background: Transgender/nonbinary (trans/NB) patients face stigma in health care settings. Health care professionals' training on trans/NB issues has historically been lacking. Interprofessional education (IPE) provides an opportunity to improve knowledge and attitudes across health care professions. The purpose of this study was to: (a) describe the development and implementation of an IPE workshop on gender-affirming care through a trans/NB community-academic partnership and (b) examine the impact of the workshop on student knowledge and attitudes. Methods: The workshop included a slide presentation on basic terminology and concepts, video clips of trans/NB patient-provider interactions, facilitated discussions of affirming practices, and a trans/NB panel. Nonparametric statistical analysis of pre- and post-survey data from 58 workshop participants measured changes in student knowledge and attitudes. Findings: Students demonstrated statistically significant improvements in knowledge (t=-12.72; p<0.01) and interpersonal comfort (t=-2.06; p<0.05) as well as sex and gender beliefs (t=-3.06; p<0.05) on subscales from the Transgender Attitudes & Beliefs Scale. The results demonstrated no differences on the human value subscale (t=-0.69; p=0.49) or on health care professional questions (t=-1.23; p=0.23). Conclusions: A community-academic partnership developed and implemented this brief interactive educational intervention, which can improve both knowledge and attitudes about trans/NB individuals' health among health professional students.

4.
J Clin Transl Sci ; 3(5): 218-226, 2019 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-31660246

RESUMEN

Community advisory boards (CABs) are a valuable strategy for engaging and partnering with communities in research. Eighty-nine percent of Clinical and Translational Science Awardees (CTSA) responding to a 2011 survey reported having a CAB. CTSAs' experiences with CABs are valuable for informing future practice. This study was conducted to describe common CAB implementation practices among CTSAs; document perceived benefits, challenges, and contributions; and examine their progress toward desirable outcomes. A cross-CTSA collaborative team collected survey data from respondents representing academic and/or community members affiliated with CTSAs with CABs. Data representing 44 CTSAs with CABs were analyzed using descriptive statistics. A majority of respondents reported practices reflecting respect for CAB members' expertise and input such as compensation (75%), advisory purview beyond their CTSA's Community Engagement program (88%), and influence over CAB operations. Three-quarters provide members with orientation and training on roles and responsibilities and 89% reported evaluating their CAB. Almost all respondents indicated their CTSA incorporates the feedback of their CABs to some degree; over half do so a lot or completely. This study profiles practices that inform CTSAs implementing a CAB and provide an evaluative benchmark for those with existing CABs.

5.
JAMA ; 321(16): 1598-1609, 2019 04 23.
Artículo en Inglés | MEDLINE | ID: mdl-31012935

RESUMEN

Importance: Low birth weight and preterm birth are associated with adverse consequences including increased risk of infant mortality and chronic health conditions. Black infants are more likely than white infants to be born prematurely, which has been associated with disparities in infant mortality and other chronic conditions. Objective: To evaluate whether Medicaid expansion was associated with changes in rates of low birth weight and preterm birth outcomes, both overall and by race/ethnicity. Design, Setting, and Participants: Using US population-based data from the National Center for Health Statistics Birth Data Files (2011-2016), difference-in-differences (DID) and difference-in-difference-in-differences (DDD) models were estimated using multivariable linear probability regressions to compare birth outcomes among infants in Medicaid expansion states relative to non-Medicaid expansion states and changes in relative disparities among racial/ethnic minorities for singleton live births to women aged 19 years and older. Exposures: State Medicaid expansion status and racial/ethnic category. Main Outcomes and Measures: Preterm birth (<37 weeks' gestation), very preterm birth (<32 weeks' gestation), low birth weight (<2500 g), and very low birth weight (<1500 g). Results: The final sample of 15 631 174 births (white infants: 8 244 924, black infants: 2 201 658, and Hispanic infants: 3 944 665) came from the District of Columbia and 18 states that expanded Medicaid (n = 8 530 751) and 17 states that did not (n = 7 100 423). In the DID analyses, there were no significant changes in preterm birth in expansion relative to nonexpansion states (preexpansion to postexpansion period, 6.80% to 6.67% [difference: -0.12] vs 7.86% to 7.78% [difference: -0.08]; adjusted DID: 0.00 percentage points [95% CI, -0.14 to 0.15], P = .98), very preterm birth (0.87% to 0.83% [difference: -0.04] vs 1.02% to 1.03% [difference: 0.01]; adjusted DID: -0.02 percentage points [95% CI, -0.05 to 0.02], P = .37), low birth weight (5.41% to 5.36% [difference: -0.05] vs 6.06% to 6.18% [difference: 0.11]; adjusted DID: -0.08 percentage points [95% CI, -0.20 to 0.04], P = .20), or very low birth weight (0.76% to 0.72% [difference: -0.03] vs 0.88% to 0.90% [difference: 0.02]; adjusted DID: -0.03 percentage points [95% CI, -0.06 to 0.01], P = .14). Disparities for black infants relative to white infants in Medicaid expansion states compared with nonexpansion states declined for all 4 outcomes, indicated by a negative DDD coefficient for preterm birth (-0.43 percentage points [95% CI, -0.84 to -0.02], P = .05), very preterm birth (-0.14 percentage points [95% CI, -0.26 to -0.02], P = .03), low birth weight (-0.53 percentage points [95% CI, -0.96 to -0.10], P = .02), and very low birth weight (-0.13 percentage points [95% CI, -0.25 to -0.01], P = .04). There were no changes in relative disparities for Hispanic infants. Conclusions and Relevance: Based on data from 2011-2016, state Medicaid expansion was not significantly associated with differences in rates of low birth weight or preterm birth outcomes overall, although there were significant improvements in relative disparities for black infants compared with white infants in states that expanded Medicaid vs those that did not.


Asunto(s)
Disparidades en el Estado de Salud , Recién Nacido de Bajo Peso , Cobertura del Seguro , Medicaid , Nacimiento Prematuro , Grupos de Población Continentales , Femenino , Hispanoamericanos , Humanos , Recién Nacido , Modelos Lineales , Masculino , Gobierno Estatal , Estados Unidos
6.
Health Res Policy Syst ; 17(1): 25, 2019 Mar 04.
Artículo en Inglés | MEDLINE | ID: mdl-30832733

RESUMEN

BACKGROUND: Although research participants are generally interested in receiving results from studies in which they participate, health researchers rarely communicate study findings to participants. The present study was designed to provide opportunity for a broad group of health researchers to describe their experiences and concerns related to sharing results (i.e. aggregate study findings) with research participants. METHODS: We used a mixed-methods concurrent triangulation design, relying on an online survey to capture health researchers' experiences, perceptions and barriers related to sharing study results with participants. Respondents were health researchers who conduct research that includes the consent of human subjects and hold a current appointment at an accredited academic medical institution within the United States. For quantitative data, the analytic strategy focused on item-level descriptive analyses. For the qualitative data, analyses focused on a priori themes and emergent subthemes. RESULTS: Respondents were 414 researchers from 44 academic medical institutions; 64.5% reported that results should always be shared with participants, yet 60.8% of respondents could identify studies in which they had a leadership role where results were not shared. Emergent subthemes from researchers' reasons why results should be shared included participant ownership of findings and benefits of results sharing to science. Reasons for not sharing included concerns related to participants' health literacy and participants' lack of desire for results. Across all respondents who described barriers to results sharing, the majority described logistical barriers. CONCLUSIONS: Study findings contribute to the literature by documenting researchers' perspectives and experiences about sharing results with research participants, which can inform efforts to improve results sharing. Most respondents indicated that health research results should always be shared with participants, although the extent to which many respondents described barriers to results sharing as well as reported reasons not to share results suggests difficulties with a one-size-fits-all approach to improving results sharing.


Asunto(s)
Actitud , Investigación Biomédica , Revelación , Difusión de la Información , Investigadores , Sujetos de Investigación , Comunicación , Humanos , Encuestas y Cuestionarios , Estados Unidos
7.
J Community Engagem Scholarsh ; 10(1): 81-90, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-30581538

RESUMEN

Community engagement (CE) has come to the forefront of academic health centers' (AHCs) work because of two recent trends: the shift from a more traditional 'treatment of disease' model of health care to a population health paradigm (Gourevitch, 2014), and increased calls from funding agencies to include CE in research activities (Bartlett, Barnes, & McIver, 2014). As defined by the Centers for Disease Control and Prevention, community engagement is "the process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to address issues affecting the well-being of those people" (Centers for Disease Control and Prevention (CDC), 1997, p. 9). AHCs are increasingly called on to communicate details of their CE efforts to key stakeholders and to demonstrate their effectiveness. The population health paradigm values preventive care and widens the traditional purview of medicine to include social determinants of patients' health (Gourevitch, 2014). Thus, it has become increasingly important to join with communities in population health improvement efforts that address behavioral, social, and environmental determinants of health (Michener, et al., 2012; Aguilar-Gaxiola, et al., 2014; Blumenthal & Mayer, 1996). This CE can occur within multiple contexts in AHCs (Ahmed & Palermo, 2010; Kastor, 2011) including in education, clinical activities, research, health policy, and community service.

8.
J Clin Transl Sci ; 2(2): 73-78, 2018 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-30294466

RESUMEN

Introduction: Effective translational research requires engagement and collaboration between communities, researchers, and practitioners. We describe a community scientist academy (CSA) developed at the suggestion of our CTSA's community advisory board to engage and capacitate community members by 1) increasing community members' and patients' understanding about the research process and 2) increasing their access to opportunities to influence and participate in research. A joint CTSA/community planning committee developed this 8-hour workshop including sessions on: 1) research definitions and processes; 2) study design; 3) study implementation; and 4) ways to get involved in research. The workshop format includes interactive exercises, content slides and videos, and researcher and community presenters. Methods: Community-based information sessions allowed assessment of community interest before piloting. Two pilots of the CSA were conducted with community members and patients. Participant data and a pre/post knowledge and feedback survey provides evaluation data. Results: The pilot included 24 diverse participants, over half of whom had not previously participated in research. Evaluation data suggest knowledge gains. Post- CSA, one third have reviewed CTSA pilot grants and over 80% want to attend further training. Conclusions: The CSA can demystify the research process for those underrepresented in research and facilitate their engagement and influence within CTSAs.

9.
Public Health Nurs ; 35(4): 353-359, 2018 07.
Artículo en Inglés | MEDLINE | ID: mdl-29566271

RESUMEN

OBJECTIVES: A community-academic team implemented a study involving collection of quantitative data using a computer-based audience response system (ARS) whereby community partners led data collection efforts. The team participated in a reflection exercise after the data collection to evaluate and identify best practices and lessons learned about the community partner-led process. DESIGN & SAMPLE: The methods involved a qualitative research consultant who facilitated the reflection exercise that consisted of two focus groups-one academic and one community research team members. The consultant then conducted content analysis. Nine members participated in the focus groups. RESULTS: The reflection identified the following themes: the positive aspects of the ARS; challenges to overcome; and recommendations for the future. CONCLUSION: The lessons learned here can help community-academic research partnerships identify the best circumstances in which to use ARS for data collection and practical steps to aid in its success.


Asunto(s)
Investigación Participativa Basada en la Comunidad/métodos , Recolección de Datos/métodos , Grupos Focales/métodos , Relaciones Comunidad-Institución , Procesamiento Automatizado de Datos/métodos , Ejercicio Físico , Humanos , Investigación Cualitativa
10.
Prog Community Health Partnersh ; 12(4): 473-482, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-30739901

RESUMEN

THE PROBLEM: Dissemination is a key component of translational research. However, research participants rarely receive findings from the studies in which they have participated. Funding agencies have a significant amount of influence to promote research dissemination through requirements, recommendations, and tools. However, it is not clear to what extent current funding agencies promote dissemination to study participants.Purpose of Article: A review of major health research funders was conducted to ascertain the current policies, recommendations, and tools related to 1) academic dissemination, 2) lay community dissemination, and 3) returning results to research participants. KEY POINTS: Several agencies have policies, recommendations, and tools for academic dissemination; however, few have the same policies, recommendations, and tools for dissemination to research participants and the lay communities they are recruited from. CONCLUSIONS: Funding agencies have a unique opportunity to encourage the dissemination of research results to research participants and lay community audiences by developing policies to increase dissemination of grantees' research findings.


Asunto(s)
Agencias Gubernamentales/organización & administración , Difusión de la Información/métodos , Política Organizacional , Apoyo a la Investigación como Asunto/organización & administración , Investigación en Medicina Traslacional/economía , /organización & administración , Humanos , National Institutes of Health (U.S.)/organización & administración , Apoyo a la Investigación como Asunto/métodos , Investigación en Medicina Traslacional/métodos , Investigación en Medicina Traslacional/organización & administración , Estados Unidos , United States Agency for Healthcare Research and Quality/organización & administración , United States Department of Agriculture/organización & administración , United States Department of Defense/organización & administración , United States Department of Veterans Affairs/organización & administración , United States Food and Drug Administration/organización & administración , United States Health Resources and Services Administration/organización & administración
11.
Prog Community Health Partnersh ; 11(3): 321-329, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-29056625

RESUMEN

BACKGROUND: Although community-engaged research (CEnR) is increasingly promoted in the literature, academic programs often fail to prepare researchers for the critical, ethical, and power issues involved in CEnR. This article documents a community-created and led workshop for CEnR researchers. OBJECTIVES: The workshop's main objective is to increase researchers' knowledge and felt experience of the "dos and don'ts" of CEnR in three research domains: entering the community, accommodating the realities and constraints of community-based organizations, and dissemination. METHODS: The Dos and Don'ts of Community Engagement workshop was developed and implemented by the Arkansas Prevention Research Center's (PRC) Community Advisory Board (CAB) in partnership with faculty and staff from the Fay W. Boozman College of Public Health (COPH) at the University of Arkansas for Medical Sciences (UAMS). The CAB developed the workshop using a collaborative, iterative process grounded in popular education. Teaching approaches include video testimonials, reverse role-play scenarios, and group reflections and debriefings. Implementation included dry runs with CAB members, a pilot, and five workshops with UAMS faculty, dissemination to an out-of-state university, and post-assessment surveys of participants. CONCLUSIONS: Participants' written evaluations suggest the workshop was engaging and successfully motivated researchers to adopt new perspectives, acknowledge power imbalances across the domains, self-reflect about their role as researchers, and consider solutions to these problems. Other reported outcomes included the development of relationships leading to new CEnR projects, unanticipated learning experienced by community member participants, requests for additional workshops through UAMS' Translational Research Institute, and development of a train-the-trainer manual and accompanying video guide.


Asunto(s)
Creación de Capacidad , Participación de la Comunidad , Investigación Participativa Basada en la Comunidad/organización & administración , Investigadores/educación , Arkansas , Humanos , Evaluación de Programas y Proyectos de Salud
12.
Trials ; 18(1): 449, 2017 Oct 02.
Artículo en Inglés | MEDLINE | ID: mdl-28969665

RESUMEN

Health research participants want the results of the studies in which they participate but do not typically receive them. Researchers generally express support for sharing results with participants but, in practice, may be unprepared or unwilling to do so. Many funders call for increased dissemination of research results beyond academic and clinical audiences, but few funders sponsor research to improve result sharing with participants. Although the solution appears straightforward (e.g., funders could incentivize researchers to share results with participants), there are critical gaps in knowledge that suggest the need for a more deliberate approach. For example, what ethical or practical concerns discourage researchers from returning results to participants? What exactly do participants plan to do with the results that they would like to receive? What are the best channels of communication for sharing results with particular participant populations? To address these knowledge gaps, we argue for a collaborative process to develop a research agenda related to result sharing with participants. With support and encouragement by funders, such research should evaluate the effects of different types of results (and results from different types of studies) on participants' behaviors, attitudes, and emotions; it should also examine the researchers' ethical, financial, logistical, methodological, and skill-related concerns and constraints related to sharing results with participants. Over time, collaborative research between researchers and participants can yield an evolving set of evidence-based guidelines for ethical, effective result sharing with participants.


Asunto(s)
Investigación Biomédica/métodos , Conducta Cooperativa , Difusión de la Información , Comunicación Interdisciplinaria , Proyectos de Investigación , Investigadores/psicología , Sujetos de Investigación/psicología , Actitud del Personal de Salud , Revelación , Conocimientos, Actitudes y Práctica en Salud , Difusión de la Información/ética
13.
AJOB Empir Bioeth ; 8(2): 69-74, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-28949841

RESUMEN

BACKGROUND: The study identifies the experiences, preferences, and perceptions of research participants regarding dissemination of research findings at the participant level and community level. METHODS: The qualitative study utilized focus-group methodology to explore research participants' experiences and preferences for the dissemination of research findings. Five focus groups were held with 53 participants who were recruited through existing community advisory boards in Arkansas. RESULTS: Participants stated that researchers should always offer to share research findings. Participants explained that disseminating findings is appropriate because of their sense of ownership of results, it encourages participation facilitating higher quality research, and it may foster greater trust between researchers and participants. Participants also provided insights on how research findings should be shared, including recommendations for appropriate mode, timing, and context, as well as ways to share sensitive findings and the role of community partners in dissemination. CONCLUSIONS: This study is consistent with other studies that document participants' desire to receive research findings and expands our knowledge by documenting participants' rationale for why they think it is important and their recommendations for how to share results. Further research is needed to understand why researchers are not disseminating study findings to participants and to test the best ways to share results.


Asunto(s)
Actitud , Investigación Biomédica , Difusión de la Información , Investigadores , Sujetos de Investigación , Adolescente , Adulto , Comités Consultivos , Anciano , Arkansas , Investigación Biomédica/ética , Participación de la Comunidad , Ética en Investigación , Femenino , Grupos Focales , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Confianza , Adulto Joven
14.
Prog Community Health Partnersh ; 11(1): 81-86, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-28603154

RESUMEN

BACKGROUND: Academic partners typically build community capacity for research, but few examples exist whereby community partners build community research capacity. This paper describes the benefits of communities sharing their "best practices" with each other for the purpose of building health research capacity. METHODS: In the context of a grant designed to engage African American communities to address health disparities (Faith Academic Initiatives Transforming Health [FAITH] in the Delta), leaders of two counties exchanged their "best practices" of creating faith-based networks and community health assessment tools to conduct a collective health assessment. LESSONS LEARNED: There were numerous strengths in engaging communities to build each other's capacity to conduct research. Communities identified with each other, perceived genuineness, conveyed legitimacy, and provided insider knowledge. CONCLUSIONS: Engaging communities to build each other's research capacity is a potentially valuable strategy.


Asunto(s)
Afroamericanos , Creación de Capacidad/organización & administración , Redes Comunitarias/organización & administración , Investigación Participativa Basada en la Comunidad , Relaciones Comunidad-Institución , Promoción de la Salud/organización & administración , Arkansas , Disparidades en el Estado de Salud , Humanos , Población Rural
15.
Prog Community Health Partnersh ; 11(4): 427-439, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-29332856

RESUMEN

BACKGROUND: Transgender/non-binary (trans/NB) individuals face major challenges, including within health care. OBJECTIVES: Transform Health Arkansas (THA) engaged trans/ NB Arkansans in defining their greatest health-related concerns to inform responsive, partnered, participatory research. METHODS: The THA partnership engaged trans/NB individuals through an interactive, trans/NB-led process in nine summits across the state and collected surveys on research interests. Descriptive analysis examined respondent characteristics by gender identity, mode of survey completion, and most pressing concerns. RESULTS: The summits, attended by 54 trans/NB and 29 cisgender individuals, received positive evaluations. The top five priorities among 140 survey respondents included (1) transition-related insurance coverage, (2) access to transition care, (3) education of health care providers, (4) public education, and (5) supportive health care systems. The THA has also led to trans/NB individuals educating a range of audiences about transgender issues. CONCLUSIONS: Next steps include dissemination, identification of evidence-based interventions addressing prioritized issues, and joint development of a research agenda.


Asunto(s)
Investigación Participativa Basada en la Comunidad/organización & administración , Prioridades en Salud , Personas Transgénero/psicología , Adulto , Arkansas , Femenino , Humanos , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios , Personas Transgénero/estadística & datos numéricos , Adulto Joven
16.
Clin Trials ; 13(6): 582-591, 2016 12.
Artículo en Inglés | MEDLINE | ID: mdl-27562368

RESUMEN

BACKGROUND: Participants in health research studies typically express interest in receiving the results from the studies in which they participate. However, participants' preferences and experiences related to receiving the results are not well understood. In general, the existing studies have had relatively small sample sizes and typically address specific and often sensitive issues within targeted populations. METHODS: This study used an online survey to explore attitudes and experiences of registrants in ResearchMatch, a large database of past, present, and potential health research participants. Survey respondents provided information related to whether or not they received research results from studies in which they participated, the methods used to communicate the results, their satisfaction with the results, and when and how they would like to receive research results from future studies. In all, 70,699 ResearchMatch registrants were notified of the study's topic. Of the 5207 registrants who requested full information about the study, 3381 respondents completed the survey. RESULTS: Approximately 33% of respondents with previous health research participation reported receiving the results. Approximately half of respondents with previous research participation reported no opportunity to request the results. However, almost all respondents said researchers should always or sometimes offer the results to participants. Respondents expressed particular interest in the results related to their (or a loved one's) health, as well as information about studies' purposes and any medical advances based on the results. In general, respondents' most preferred dissemination methods for the results were email and website postings. The least desirable dissemination methods for the results included Twitter, conference calls, and text messages. Across all the results, we compare the responses of respondents with and without previous research participation experience and those who have worked in research organizations versus those who have not. Compared to respondents who have previous participation experience, a greater proportion of respondents with no participation experience indicated that the results should always be shared with participants. Likewise, respondents with no participation experience placed higher importance on the receipt of each type of results' information included in the survey. CONCLUSION: We present findings from a survey assessing attitudes and experiences of a broad sample of respondents that addresses gaps in knowledge related to participants' preferences for receiving the results. The study's findings highlight the potential for inconsistency between respondents' expressed preferences to receive specific types of results via specific methods and researchers' unwillingness or inability to provide them. We present specific recommendations to shift the approach of new studies to investigate participants' preferences for receiving research results.


Asunto(s)
Actitud Frente a la Salud , Revelación , Difusión de la Información , Prioridad del Paciente , Sujetos de Investigación , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Investigación Biomédica , Comunicación , Correo Electrónico , Femenino , Humanos , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios , Adulto Joven
17.
J Public Health (Oxf) ; 38(3): 502-510, 2016 09.
Artículo en Inglés | MEDLINE | ID: mdl-26359314

RESUMEN

BACKGROUND: Health assessments are used to prioritize community-level health concerns, but the role of individuals' health concerns and experiences is unknown. We sought to understand to what extent community health assessments reflect health concerns of the community-at-large versus a representation of the participants sampled. METHODS: We conducted a health assessment survey in 30 rural African American churches (n = 412). Multivariable logistic regression produced odds ratios examining associations between personal health concern (this health concern is important to me), personal health experience (I have been diagnosed with this health issue) and community health priorities (this health concern is important to the community) for 20 health issues. RESULTS: Respondents reported significant associations for 19/20 health conditions between personal health concern and the ranking of that concern as a community priority (all P < 0.05). Inconsistent associations were seen between personal health experience of a specific health condition and the ranking of that condition as a community priority. CONCLUSIONS: Personal health concerns reported by individuals in a study sample may impact prioritization of community health initiatives. Further research should examine how personal health concerns are formed.


Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Salud Pública , Afroamericanos/psicología , Afroamericanos/estadística & datos numéricos , Investigación Participativa Basada en la Comunidad , Femenino , Prioridades en Salud/estadística & datos numéricos , Estado de Salud , Encuestas Epidemiológicas , Humanos , Modelos Logísticos , Masculino , Persona de Mediana Edad , Población Rural/estadística & datos numéricos , Virginia
18.
Prev Chronic Dis ; 12: E115, 2015 Jul 23.
Artículo en Inglés | MEDLINE | ID: mdl-26203813

RESUMEN

BACKGROUND: Underrepresentation of racial minorities in research contributes to health inequities. Important factors contributing to low levels of research participation include limited access to health care and research opportunities, lack of perceived relevance, power differences, participant burden, and absence of trust. We describe an enhanced model of community engagement in which we developed a community-linked research infrastructure to involve minorities in research both as participants and as partners engaged in issue selection, study design, and implementation. COMMUNITY CONTEXT: We implemented this effort in Jefferson County, Arkansas, which has a predominantly black population, bears a disproportionate burden of chronic disease, and has death rates above state and national averages. METHODS: Building on existing community-academic partnerships, we engaged new partners and adapted a successful community health worker model to connect community residents to services and relevant research. We formed a community advisory board, a research collaborative, a health registry, and a resource directory. OUTCOME: Newly formed community-academic partnerships resulted in many joint grant submissions and new projects. Community health workers contacted 2,665 black and 913 white community residents from December 2011 through April 2013. Eighty-five percent of blacks and 88% of whites were willing to be re-contacted about research of potential interest. Implementation challenges were addressed by balancing the needs of science with community needs and priorities. INTERPRETATION: Our experience indicates investments in community-linked research infrastructure can be fruitful and should be considered by academic health centers when assessing institutional research infrastructure needs.


Asunto(s)
Enfermedad Crónica/prevención & control , Participación de la Comunidad/tendencias , Investigación Participativa Basada en la Comunidad , Disparidades en Atención de Salud , Grupos Minoritarios/psicología , Arkansas , Enfermedad Crónica/epidemiología , Enfermedad Crónica/mortalidad , Agentes Comunitarios de Salud/educación , Relaciones Comunidad-Institución , Conducta Cooperativa , Implementación de Plan de Salud , Necesidades y Demandas de Servicios de Salud , Indicadores de Salud , Humanos , Grupos Minoritarios/estadística & datos numéricos , Estudios de Casos Organizacionales , Sistema de Registros , Factores Socioeconómicos
19.
Soc Work Health Care ; 54(1): 1-15, 2015.
Artículo en Inglés | MEDLINE | ID: mdl-25588093

RESUMEN

Hospital readmissions can negatively impact cost and patient outcomes. Predictors of 30-day readmissions have been primarily identified using medical claims data. Reported here are results of a patient survey developed as part of regular hospital quality assurance activities. Two-thirds of patients reported good discharge experiences but were still readmitted. One-third of patients discharged had a post-discharge doctor appointment scheduled; half were readmitted before that scheduled appointment. Results suggest post-discharge experiences could be improved, especially the timing of follow up doctor appointments. Identified weaknesses in the survey process highlight need for engagement of survey methodologists in efforts to understand patient experiences.


Asunto(s)
Tiempo de Internación/estadística & datos numéricos , Alta del Paciente/estadística & datos numéricos , Readmisión del Paciente/estadística & datos numéricos , Calidad de la Atención de Salud/estadística & datos numéricos , Adulto , Anciano , Anciano de 80 o más Años , Arkansas , Recolección de Datos , Femenino , Humanos , Masculino , Persona de Mediana Edad , Factores Socioeconómicos , Estados Unidos , Adulto Joven
20.
Int Public Health J ; 5(1): 115-128, 2013.
Artículo en Inglés | MEDLINE | ID: mdl-25750694

RESUMEN

Too often, populations experiencing the greatest burden of disease and disparities in health outcomes are left out of or ineffectively involved in academic-led efforts to address issues that impact them the most. Community-based participatory research (CBPR) is an approach increasingly being used to address these issues, but the science of CBPR is still viewed by many as a nascent field. Important to the development of the science of CBPR is documentation of the partnership process, particularly capacity building activities important to establishing the CBPR research infrastructure. This paper uses a CBPR Logic Model as a structure for documenting partnership capacity building activities of a long-term community-academic partnership addressing public health issues in Arkansas, U.S. Illustrative activities, programs, and experiences are described for each of the model's four constructs: context, group dynamics, interventions, and outcomes. Lessons learned through this process were: capacity building is required by both academic and community partners; shared activities provide a common base of experiences and expectations; and creating a common language facilitates dialogue about difficult issues. Development of community partnerships with one institutional unit promoted community engagement institution-wide, enhanced individual and partnership capacity, and increased opportunity to address priority issues.

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