Empowering the Participant Voice (EPV): Design and implementation of collaborative infrastructure to collect research participant experience feedback at scale.

Empowering the Participant Voice (EPV) is an NCATS-funded six-CTSA collaboration to develop, demonstrate, and disseminate a low-cost infrastructure for collecting timely feedback from research participants, fostering trust, and providing data for improving clinical translational research. EPV leverages the validated Research Participant Perception Survey (RPPS) and the popular REDCap electronic data-capture platform. This report describes the development of infrastructure designed to overcome identified institutional barriers to routinely collecting participant feedback using RPPS and demonstration use cases. Sites engaged local stakeholders iteratively, incorporating feedback about anticipated value and potential concerns into project design. The team defined common standards and operations, developed software, and produced a detailed planning and implementation Guide. By May 2023, 2,575 participants diverse in age, race, ethnicity, and sex had responded to approximately 13,850 survey invitations (18.6%); 29% of responses included free-text comments. EPV infrastructure enabled sites to routinely access local and multi-site research participant experience data on an interactive analytics dashboard. The EPV learning collaborative continues to test initiatives to improve survey reach and optimize infrastructure and process. Broad uptake of EPV will expand the evidence base, enable hypothesis generation, and drive research-on-research locally and nationally to enhance the clinical research enterprise.

Grassroots and Digital Outreach Strategies Raise Awareness of COVID-19 Information and Research in Baltimore City.

We aimed to disseminate reliable COVID-19 information to the Black and Latino communities of Baltimore City, Maryland, between July 2020 and December 2022. With community partners, we disseminated evidence-based COVID-19 information via grassroots and digital strategies, including Hopkins Opportunity for Participant Engagement, and connected volunteers to COVID-19 research. Using a multimodal approach facilitated dissemination of reliable information and raised awareness of research; evaluation of trust is ongoing. Robust, multimodal strategies are needed to foster trust and equity among diverse communities. (Am J Public Health. 2024;114(S1):S69-S73. https://doi.org/10.2105/AJPH.2023.307492).

Predictors of Depressive Symptoms in Caregivers of Children With Poorly Controlled Asthma: Is the Neighborhood Context Important?

Children residing in low-income neighborhoods are disproportionately affected by asthma morbidity and mortality. Neighborhood violence has been explored in relationship to child morbidity and health and developmental outcomes, but less is known about the relationship of violence to caregiver mental health. The purpose of this study was to examine the relationship of neighborhood violent crime victimization (objective and subjective measures), perceptions of community well-being and support, and depressive symptoms among a sample of primarily single female caregivers of children with uncontrolled asthma. This is a secondary analysis of baseline data obtained from a randomized controlled trial of a home-based environmental control intervention for children aged 3 to 12 years, who were primarily African American, and diagnosed with persistent, uncontrolled asthma. Results showed that both objective and subjective measures of crime, particularly in those with relatively low life stress (P < .001), limited education of the caregiver (P < .001), and fewer children (P < .01) in the household had direct associations with depressive symptoms in caregivers of children with uncontrolled asthma. Neighborhood perceptions of satisfaction and a sense of community, as well as perceptions of social support, were not associated with depressive symptoms. Our findings emphasize the need to screen for depressive symptoms, life stress, as well as both objective and subjective perceptions of neighborhood violence among caregivers of children with poorly controlled asthma. Furthermore, when providing holistic care to these caregivers, stress reduction and the provision of mental health resources are paramount.

Electronic medical record-based cohort selection and direct-to-patient, targeted recruitment: early efficacy and lessons learned.

OBJECTIVE: The study sought to characterize institution-wide participation in secure messaging (SM) at a large academic health network, describe our experience with electronic medical record (EMR)-based cohort selection, and discuss the potential roles of SM for research recruitment. MATERIALS AND METHODS: Study teams defined eligibility criteria to create a computable phenotype, structured EMR data, to identify and recruit participants. Patients with SM accounts matching this phenotype received recruitment messages. We compared demographic characteristics across SM users and the overall health system. We also tabulated SM activation and use, characteristics of individual studies, and efficacy of the recruitment methods. RESULTS: Of the 1 308 820 patients in the health network, 40% had active SM accounts. SM users had a greater proportion of white and non-Hispanic patients than nonactive SM users id. Among the studies included (n = 13), 77% recruited participants with a specific disease or condition. All studies used demographic criteria for their phenotype, while 46% (n = 6) used demographic, disease, and healthcare utilization criteria. The average SM response rate was 2.9%, with higher rates among condition-specific (3.4%) vs general health (1.4%) studies. Those studies with a more inclusive comprehensive phenotype had a higher response rate. DISCUSSION: Target population and EMR queries (computable phenotypes) affect recruitment efficacy and should be considered when designing an EMR-based recruitment strategy. CONCLUSIONS: SM guided by EMR-based cohort selection is a promising approach to identify and enroll research participants. Efforts to increase the number of active SM users and response rate should be implemented to enhance the effectiveness of this recruitment strategy.

Improving Care of Inner-City Children with Poorly Controlled Asthma: What Mothers Want You to Know.

INTRODUCTION: Low-income caregiver perspectives on asthma management are understudied but may illuminate strategies to improve care delivery and child outcomes. METHOD: Purposive sampling methods were used to recruit 15 caregivers of children with frequent asthma emergency department visits. Interviews explored how poverty and stress affect asthma management. Grounded theory coding techniques were used to analyze the data. RESULTS: Participants were the biological mother (100%) and were poor (75% had mean annual income ≤ $30,000). Their children (mean age = 6.9 years) were African American (100%), enrolled in Medicaid (100%), and averaged 1.5 emergency department visits over the prior 3 months. Four themes emerged: (a) Deplorable Housing Conditions, (b) Allies and Adversaries in School-Based Asthma Management, (c) Satisfaction With Asthma Health Care Delivery, and (d) Prevalent Psychological Distress. DISCUSSION: Impoverished caregivers of children with frequent asthma emergency department visits describe stress that is multifaceted, overwhelming, and difficult to eradicate. Their experiences underscore the need for improved school-based asthma management and family-centered approaches to health care delivery.

Characterization of Stress in Low-Income, Inner-City Mothers of Children with Poorly Controlled Asthma.

The goal of this longitudinal analysis was to characterize factors associated with the experience of life stress in low-income, inner-city mothers of minority children with high-risk asthma.Participants (n = 276) reported on family demographics, child asthma control and healthcare utilization, social support, contemporary life difficulties (housing, finances, violence exposure) measured by the validated Crisis in Family Systems scale, and daily stress. Latent growth curve modeling examined predictors of life stress across 12 months as a function of home and community difficulties, asthma-specific factors, and social support. Mothers were primarily single (73%), unemployed (55%), and living in extreme poverty with most (73%) reporting an annual family income <$20,000 (73%). The children were young (mean age = 5.59, SD = 2.17), African-American (96%), and had poorly controlled asthma (94%) at study enrollment. Higher daily stress was associated with financial difficulties, safety concerns in the home and community, and housing problems. Access to social support was consistently related to reduced stress. The only asthma-specific factor associated with life stress was healthcare utilization, with more emergency services for asthma related to higher daily stress. Findings underscore the clinical significance of assessing diverse home and community stressors and social support in low-income, inner-city caregivers of children with poorly controlled asthma.

Parental decision making associated with pediatric emergency department use for asthma.

BACKGROUND: Disadvantaged minority children are disproportionately affected by asthma. This group is also known to frequently use the emergency department (ED) for asthma care. Understanding decisions for use of the ED is important to prevent high cost. OBJECTIVE: To examine caregiver factors associated with the decision to use the ED for asthma care in inner-city children with asthma. METHODS: One hundred fifty participants in a randomized clinical trial testing the effectiveness of a home-based asthma intervention were enrolled, and questionnaires were administered to caregivers during the child's ED asthma visit. Sociodemographics, health characteristic data, and caregiver interview data were examined to ascertain factors that affected caregiver decision making to use the ED for asthma care. A cluster analysis was performed to correlate caregiver reasons for the decision to use the ED for asthma care. RESULTS: Three clusters emerged for decision making: urgency, preference for the use of the ED, and access to care issues. The perception of urgency was the most common reason reported by caregivers (91%) followed by reporting a preference for the ED for care (37%) and reporting access to care issues (31%). Access to care was primarily attributable to the inability to get a same-day appointment with their primary care practitioner (24%). CONCLUSION: The caregiver factors involved in the decision to use the ED can provide a basis for further intervention and investigation. Such factors include caregiver asthma home management, improvement in relationships with primary care practitioners, and access to care-related issues.