A randomized controlled trial of generic and localized MedlinePlus-based information resources for hard-to-reach urban Hispanic community.

OBJECTIVE: To determine if the Conexion digital localized health information resource about diabetes and depression could increase patient activation among Hispanic low-income adults. MATERIALS AND METHODS: A nonblinded randomized controlled trial was conducted (NCT03984929). Participants at least 18 years old living in Washington Heights/Inwood, New York, were recruited from the community between July 2019 and August 2020 and randomized 1:1 to either the intervention group (localization of MedlinePlus resources customized with community components) or the control group (no localized community components). The primary outcome, patient activation, and secondary outcomes, knowledge, self-efficacy, and behavior change, were collected through surveys at 1-month follow-up. RESULTS: Of the 134 participants recruited, 50.7% (n = 68) completed the 1-month follow-up. We found no statistically significant differences in the sociodemographic and baseline characteristics between those who missed the 1-month survey and those who completed it. No significant differences were observed in patient activation at 1-month. However, patient activation among all participants (n = 68) significantly increased (P = .048). Statistically significant improvements were also found in self-efficacy (P < .03). In multivariate analysis, birth country outside the United States and higher self-rated attachment to the community emerged as significant predictors of higher patient activation scores. DISCUSSION: While the trial did not detect significant differences between groups, all participants demonstrated increased patient activation scores and improved secondary outcomes. While other factors may have contributed to this increase, our study suggests that access to carefully selected high-quality health information materials delivered digitally in the context of a community may result in improvements comparable to localized content in a hard-to-reach urban Hispanic population. CONCLUSIONS: Our study highlights the potential of making carefully selected digital information accessible to hard-to-reach communities.

Cognitive and emotional factors related to COVID-19 among high-risk ethnically diverse adults at the onset of the New York City outbreak: A cross-sectional survey.

A cross-sectional survey was conducted among high-risk, racially/ethnically diverse adults at the point in time when New York City (NYC) became the COVID-19 pandemic's global epicenter. The study objective was to assess the threat and coping appraisals (cognitive factors known to correspond with people's willingness to adopt behaviorally focused interventions) and levels of distress, anxiety, and intolerance for uncertainty (emotional factors). Survey respondents were recruited in April 2020 using an online survey with unpaid recruitment on the GetHealthyHeights.org community-oriented website. We also recruited participants that engaged in previous research studies to gain survey responses from community members at higher risk for COVID-19 complications due to comorbidities compared to the general population. Analysis was performed to test for differences in survey responses by comorbidities, age, race, ethnicity, and employment status. Results show that the devastating effects of the pandemic appear to have uniquely impacted minority respondents, who reported significantly higher levels of anxiety and were significantly more likely to report having little control over whether they will get COVID-19 compared with White/non-Hispanic respondents. Minority respondents also had significantly higher mean scores on the behaviorally focused dimension of the intolerance of uncertainty (IU) scale, which measures avoidance and paralysis in the face of uncertainty. In multivariate analysis, IU predicted anxiety levels, and this association was not mediated by cognitive factors (threat and coping appraisals). By conducting this survey early in the pandemic, our study uniquely evaluated cognitive and emotional factors among a racially/ethnically diverse group of NYC residents during the height of the COVID-19 pandemic. Our findings suggest the need to acknowledge the disparities that appear to exist in pandemic response and for culturally tailored messaging and interventions. Few studies have reported differences by race and ethnicity during pandemic exposure. Therefore, further research on factors that may influence pandemic response among minority populations is needed.

Community Engagement in Academic Health Centers: A Model for Capturing and Advancing Our Successes.

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.

Commentary: fatalismo reconsidered: a cautionary note for health-related research and practice with Latino populations.

Over recent years, interest has grown in studying whether fatalismo (fatalism) deters Latinos from engaging in various health promotion and disease detection behaviors, especially with regard to cancer screening. This commentary presents problematic issues posed by the concept of fatalism, focusing on research on Latinos and cancer screening. We discuss key findings in the literature, analyze methodologic and conceptual problems, and highlight structural contexts and other barriers to health care as critical to the fatalism concept. Although the need to better understand the role of fatalistic beliefs on health is great, we discuss the public health implications of reaching premature conclusions concerning the effect of fatalism on Latinos' cancer screening behaviors.

Does a Community-Engaged Health Informatics Platform Facilitate Resource Connectivity? An Evaluation Framework.

Community-engaged health informatics (CEHI) integrates informatics with community-based participatory public health. Addressing social determinants and population health requires mobilization of health-related resources in communities. We present a framework for evaluating the process and outcomes of a CEHI platform designed to improve connectivity among community health resources. The GetHealthyHeights.org CEHI platform was implemented in an urban low-income community. It was designed to facilitate connectivity among health-related community-based organizations (CBOs). To evaluate the process towards and the achievement of connectivity, a conceptual framework, methodology, and operational measures were defined. A system-level approach, such as social network analysis, is required to capture the community as one dynamic unit. The evaluation framework specifies network connectivity metrics based on a social network survey. A network survey of CBOs (n=35) at baseline demonstrates utility of social network data for characterizing connectivity among community resources. The evaluation framework models how informatics and community resources improve population health.

Assessing usefulness and researcher satisfaction with consent form templates.

INTRODUCTION: We aimed to improve the research consenting process by developing and evaluating simplified consent forms. METHODS: Four templates written at the eighth-tenth grade reading level were developed and trialed by a group of experts in clinical research, health literacy, national regulatory requirements, and end users. Researchers from protocols which had received expedited review were surveyed at 2 time points regarding their use and assessment of the templates. RESULTS: At baseline 18/86 (20.9%) responding researchers had heard of the templates and 5 (5.8%) reported that they had used them; 2 years later, 54.2% (32/59) had heard of the templates and 87.5% (28/32) had used them (p<0.001). CONCLUSIONS: Consent form templates may be one mechanism to improve patient comprehension of research protocols as well as efficiency of the review process, but require considerable time for development and implementation, and one key to their success is involvement and support from the IRB and technical staff.

Toward a theory-driven model of acculturation in public health research.

Interest in studying the impact of acculturation on immigrant health has increased in tandem with the growth of the Latino population in the United States. Linear assimilation models continue to dominate public health research despite the availability of more complex acculturation theories that propose multidimensional frameworks, reciprocal interactions between the individual and the environment, and other acculturative processes among various Latino groups. Because linear and unidimensional assessments (e.g., nativity, length of stay in the United States, and language use) provide constricted measures of acculturation, the rare use of multidimensional acculturation measures and models has inhibited a more comprehensive understanding of the association between specific components of acculturation and particular health outcomes. A public health perspective that incorporates the roles of structural and cultural forces in acculturation may help identify mechanisms underlying links between acculturation and health among Latinos.

Design of a Community-Engaged Health Informatics Platform with an Architecture of Participation.

Community-engaged health informatics (CEHI) applies information technology and participatory approaches to improve the health of communities. Our objective was to translate the concept of CEHI into a usable and replicable informatics platform that will facilitate community-engaged practice and research. The setting is a diverse urban neighborhood in New York City. The methods included community asset mapping, stakeholder interviews, logic modeling, analysis of affordances in open-source tools, elicitation of use cases and requirements, and a survey of early adopters. Based on synthesis of data collected, GetHealthyHeigths.org (GHH) was developed using open-source LAMP stack and Drupal content management software. Drupal's organic groups module was used for novel participatory functionality, along with detailed user roles and permissions. Future work includes evaluation of GHH and its impact on agency and service networks. We plan to expand GHH with additional functionality to further support CEHI by combining informatics solutions with community engagement to improve health.

Barriers and Facilitators to Patient-Provider Communication When Discussing Breast Cancer Risk to Aid in the Development of Decision Support Tools.

The purpose of this study was to identify barriers and facilitators to patient-provider communication when discussing breast cancer risk to aid in the development of decision support tools. Four patient focus groups (N=34) and eight provider focus groups (N=10) took place in Northern Manhattan. A qualitative analysis was conducted using Atlas.ti software. The coding yielded 62.3%-94.5% agreement. The results showed that 1) barriers are time constraints, lack of knowledge, low health literacy, and language barriers, and 2) facilitators are information needs, desire for personalization, and autonomy when communicating risk in patient-provider encounters. These results will inform the development of a patient-centered decision aid (RealRisks) and a provider-facing breast cancer risk navigation (BNAV) tool, which are designed to facilitate patient-provider risk communication and shared decision-making about breast cancer prevention strategies, such as chemoprevention.

Fatalism or destiny? A qualitative study and interpretative framework on Dominican women's breast cancer beliefs.

BACKGROUND: A growing literature on Latino's beliefs about cancer focuses on the concept of fatalismo (fatalism), despite numerous conceptual ambiguities concerning its meaning, definition, and measurement. This study explored Latina women's views on breast cancer and screening within a cultural framework of destino ("destiny"), or the notion that both personal agency and external forces can influence health and life events. METHODS: Semi-structured interviews were conducted with 25 Latinas from the Dominican Republic aged 40 or over. RESULTS: Respondents reported complex notions of health locus of control that encompassed both internal (e.g., individual action) and external (e.g., the will of God) forces shaping breast cancer prevention efforts. Furthermore, women actively participated in screening because they believed that cancer could become a death sentence if diagnosed late or left untreated. DISCUSSION: In contrast to simplistic notions of "fatalism", our analysis suggests complex strategies and beliefs regarding breast cancer and cancer screening that speak of resiliency rather than hopelessness.