The National Heart Lung and Blood Institute Disparities Elimination through Coordinated Interventions to Prevent and Control Heart and Lung Disease Alliance.

OBJECTIVE: To describe the National Heart Lung and Blood Institute (NHLBI) sponsored Disparities Elimination through Coordinated Interventions to Prevent and Control Heart and Lung Disease (DECIPHeR) Alliance to support late-stage implementation research aimed at reducing disparities in communities with high burdens of cardiovascular and/or pulmonary disease. STUDY SETTING: NHBLI funded seven DECIPHeR studies and a Coordinating Center. Projects target high-risk diverse populations including racial and ethnic minorities, urban, rural, and low-income communities, disadvantaged children, and persons with serious mental illness. Two projects address multiple cardiovascular risk factors, three focus on hypertension, one on tobacco use, and one on pediatric asthma. STUDY DESIGN: The initial phase supports planning activities for sustainable uptake of evidence-based interventions in targeted communities. The second phase tests late-stage evidence-based implementation strategies. DATA COLLECTION/EXTRACTION METHODS: Not applicable. PRINCIPAL FINDINGS: We provide an overview of the DECIPHeR Alliance and individual study designs, populations, and settings, implementation strategies, interventions, and outcomes. We describe the Alliance's organizational structure, designed to promote cross-center partnership and collaboration. CONCLUSIONS: The DECIPHeR Alliance represents an ambitious national effort to develop sustainable implementation of interventions to achieve cardiovascular and pulmonary health equity.

Community-Driven Health Solutions on Chicago's South Side.

To reduce mortality for people experiencing cardiovascular health disparities, new innovations in health care must be implemented with strategic partnerships that involve trusted organizations and community members.

Community-Initiated Research Engagement: Equitable Partnership Delivering Research-Ready Faith-Based Ambassadors.

BACKGROUND: Faith-based communities supporting diverse and underserved communities are increasingly being recognized by health researchers as valued partners for research engagement. Although the "why engage" is clearly documented, the how and lessons learned is less well evidenced. OBJECTIVES: This article describes community-academic collaboration initiated by African American faith-based church leaders to foster equitable partnership, engagement and shared decision making in patient-centered health research initiatives. METHODS: A phased process of relationship and capacity building was used to found and operationalize a mixed stakeholder community advisory board (CAB). Core phases presented in this article are (1) pre-CAB capacity building, (2) developing the CAB vision and mission, (3) extending CAB capacity, and (4) sustaining CAB capacity. LESSONS LEARNED: Collaborative governance and shared goal setting delivers research engagement which supports the data needs and aspirations of faith-based communities. CONCLUSIONS: Faith-based communities have the capacity to design and deliver community appropriate governance for research engagement.

A Novel Patient Recruitment Strategy: Patient Selection Directly from the Community through Linkage to Clinical Data.

OBJECTIVE: This article presents and describes our methods in developing a novel strategy for recruitment of underrepresented, community-based participants, for pragmatic research studies leveraging routinely collected electronic health record (EHR) data. METHODS: We designed a new approach for recruiting eligible patients from the community, while also leveraging affiliated health systems to extract clinical data for community participants. The strategy involves methods for data collection, linkage, and tracking. In this workflow, potential participants are identified in the community and surveyed regarding eligibility. These data are then encrypted and deidentified via a hashing algorithm for linkage of the community participant back to a record at a clinical site. The linkage allows for eligibility verification and automated follow-up. Longitudinal data are collected by querying the EHR data and surveying the community participant directly. We discuss this strategy within the context of two national research projects, a clinical trial and an observational cohort study. CONCLUSION: The community-based recruitment strategy is a novel, low-touch, clinical trial enrollment method to engage a diverse set of participants. Direct outreach to community participants, while utilizing EHR data for clinical information and follow-up, allows for efficient recruitment and follow-up strategies. This new strategy for recruitment links data reported from community participants to clinical data in the EHR and allows for eligibility verification and automated follow-up. The workflow has the potential to improve recruitment efficiency and engage traditionally underrepresented individuals in research.

Gastroesophageal reflux disease as an etiology of sleep disturbance in subjects with insomnia and minimal reflux symptoms: a pilot study of prevalence and response to therapy.

BACKGROUND: Gastroesophageal reflux disease (GERD) is a well-recognized cause of impaired sleep in patients with frequent GERD symptoms, as well as those with sleep apnea. GERD's role in sleep disturbance of minimally symptomatic patients with poor sleep quality is less clear. AIM: We aimed to define the prevalence of GERD-related sleep disturbance in minimally-symptomatic subjects with demonstrated insomnia, and to assess the changes in sleep efficiency in these subjects after vigorous acid suppression. METHODS: We recruited subjects aged 18-75 years reporting at least 6 months of insomnia, and sleep difficulty at least three nights per week. Subjects with a BMI > 30, a history of snoring or ongoing use of proton pump inhibitor or H2 receptor antagonist were excluded. Subjects underwent concurrent sleep study with dual channel 24-h pH study. Sleep efficiency, defined as the percentage of time after sleep initiation that the subject actually slept, and spontaneous arousal index, defined as the number of arousals per hour, were calculated. Those with a sleep study demonstrating poor sleep quality (sleep efficiency of < 83%, and > 10 arousals/h for those aged < 45, and > 15 for those who were 45 or older) and no obstructive sleep apnea were treated with rabeprazole 20 mg PO BID x 14 days. After 14 days, the subjects underwent repeat sleep study with pH monitoring. The GERD Symptom Assessment Scale (GSAS), the Epworth Sleepiness Scale (ESS) and the Functional Outcomes of Sleep Questionnaire (FOSQ) were administered to subjects at study inception and after 2 weeks of therapy. RESULTS: Twenty-four subjects reporting insomnia were enrolled, and 20 met criteria for disordered sleep and no OSA. Seventeen completed both the first and second studies, and 16 were adequate for analysis. Baseline GSAS demonstrated trivial or no reflux symptoms in the cohort (no subject scored > 8 out of 45 on GSAS, corresponding to a median rating of reflux symptoms of "not at all"). Four of 16 subjects (25%) demonstrated abnormal pH studies at baseline. All four had normalization of acid exposures on PPI. After 2 weeks of treatment, three of these four subjects had normalization of sleep efficiency, compared to 4 of 12 of the subjects with normal Johnson-DeMeester scores. Repeated measures analysis showed significant improvement in spontaneous arousal index between the first and second study for the whole group (P < 0.0035). Pre- and post-therapy ESS and FOSQ scores were not significantly different. CONCLUSIONS: Despite the lack of GERD symptoms, a significant minority of subjects with sleep disturbance have abnormal acid exposures. These preliminary data suggest that aggressive treatment of GERD in such patients may result in improvement in sleep efficiency.

Nonurgent pediatric emergency department visits: Care-seeking behavior and parental knowledge of insurance.

OBJECTIVES The goals of this study were to describe the factors associated with utilization of emergency services for nonurgent illnesses by insured children in a pediatric emergency department (PED) and to assess parental knowledge of their insurance and its influence on care-seeking behaviors. METHODS We conducted a prospective, descriptive survey of parents of insured children evaluated for nonurgent illnesses in an urban PED. RESULTS A total of 251 surveys were completed. The primary reason chosen by the parent for the PED visit was convenience in 62.8% of cases, a perceived true emergency in 33.6%, and lack of other access to a physician in 3.6%. Parents choosing the PED for perceived emergencies were more likely to state that the illness was life threatening or required hospital admission than those who came because of convenience (33/84 vs. 28/157; < 0.001). Only 38.7% stated that they were educated as to what problems are considered emergencies by their insurance carriers. PED referrals for nonurgent complaints are required by the insurance carrier for 74.9% of the population; however, only 37.2% of the parents stated that referrals were necessary. Primary care physician (PCP) contact was made prior to the visit by 45.4% of parents. Of those who called the PCP, 72.6% stated that they were referred to the PED. Of the parents who believed that a referral was required, those stating that the problem was an emergency were more likely to have contacted the PCP than those who came because of convenience (27/37 vs. 22/46; < P 0.037).CONCLUSIONS Parents frequently do not understand their insurance coverage as it relates to emergency care utilization. This lack of knowledge influences their care-seeking behaviors for nonurgent illnesses. Convenience is a significant factor in PED utilization for nonurgent complaints.