Although the involvement of citizen scientists in research can contribute to scientific benefits, much remains unknown about participants’ lived experiences in research. Thus, the purpose of this study was to explore how citizen scientists describe their role in, motivation for, and communication with researchers.

In-depth interviews (N = 9) were conducted with citizen scientists at a translational health research center.

Key results include that citizen scientists were invested in learning researchers’ discipline-specific language and viewed small group sizes as conducive to their active participation.

Programs can apply these findings in an effort to improve citizen scientists’ long-term engagement in research.

Transdisciplinary (TD) research and community-based participatory research (CBPR) represent promising investigative approaches to ameliorate health disparities. Public investments in team-based TD research to address multifactorial public health problems have increased over the last two decades. Similarly, recognition that community participation in research and social action is essential to promoting health equity is reflected in increased prioritization of community engagement in research and practice. Yet, models that describe and guide the combined TD and CBPR approach are lacking.

We utilized a qualitative, convergent parallel case study design that included document reviews and one-on-one interviews to assess how investigators from the Centers for Population Health and Health Disparities (CPHHD) initiative integrated TD team science and CBPR in their work, and what they perceived as the impact of that work on health equity.

Twenty-five CPHHD investigators and National Institutes of Health program staff participated in a one-on-one interview. Document and interview data informed the development of an iterative conceptual model of TD CBPR comprising five domains: problem focus, contexts, collaboration and partnership, outcomes, and societal impact of TD CBPR.

TD team science and CBPR are integrally related; combining principles of both can facilitate more efficient, equitable progress toward team outcomes, improved population health, and increased health equity. This model could assist researchers and public health practitioners in designing community-relevant, scientifically rigorous research with practical implications for improving health and quality of life among marginalized populations.

Adequate equitable recruitment of underrepresented groups in clinical research and trials is a national problem and remains a daunting challenge to translating research discoveries into effective healthcare practices. Engagement, recruitment, and retention (ER&R) training programs for Clinical Research Professionals (CRPs) often focus on policies and regulations. Although some training on the importance of diversity and inclusion in clinical research participation has recently been developed, there remains a need for training that couples critical equity, diversity, and inclusion (EDI) concepts with skill development in effective recruitment and retention strategies, regulations, and best practices.

We developed the ER&R Certificate program as a holistic approach to provide Duke University CRPs the opportunity to build competency in gap areas and to increase comfort in championing equitable partnerships with clinical research participants. The thirteen core and elective courses include blended learning elements, such as e-learning and wiki journaling prompts, to facilitate meaningful discussions. Pre- and post-assessments administered to CRP program participants and their managers assessed program impact on CRP skills in ER&R tasks and comfort in equitable, diverse, and inclusive engagement of clinical research participants.

Results from the first two cohorts indicate that CRPs perceived growth in their own comfort with program learning objectives, especially those centered on participant partnership and EDI principles, and most managers witnessed growth in competence and responsibility for ER&R-related tasks. Results suggest value in offering CRPs robust training programs that integrate EDI and ER&R training.

Socially assistive robots (SARs) are a promising tool to manage children’s pain and distress related to medical procedures, but current options lack autonomous adaptability. The aim of this study was to understand children’s and caregivers' perceptions surrounding the use of an artificial intelligence (AI)-enhanced SAR to provide personalized procedural support to children during intravenous insertion (IVI) to inform the design of such a system following a user-centric approach.

This study presents a descriptive qualitative needs assessment of children and caregivers. Data were collected via semi-structured individual interviews and focus groups. Participants were recruited from two Canadian pediatric emergency departments (EDs) between April 2021 and January 2022.

Eleven caregivers and 19 children completed 27 individual interviews and one focus group. Three main themes were identified: A. Experience in the clinical setting, B. Acceptance of and concerns surrounding SARs, and C. Features that support child engagement with SARs. Most participants expressed comfort with robot technology, however, concerns were raised about sharing personal information, photographing/videotaping, and the possibility of technical failure. Suggestions for feature enhancements included increasing movement to engage a child’s attention and tailoring language to developmental age. To enhance the overall ED experience, participants also identified a role for the SAR in the waiting room.

Artificial intelligence-enhanced SARs were perceived by children and caregivers as a promising tool for distraction during IVIs and to enhance the overall ED experience. Insights collected will be used to inform the design of an AI-enhanced SAR.

Sudden unexpected infant death is the leading cause of infant mortality with black: white infant mortality remaining at 2:1 for the last decade. Smartphone technology provides a convenient and accessible tool for injury prevention anticipatory guidance among at-risk communities.

A convenience sample of pregnant teen mothers who own a smartphone. During a 1-month postnatal home visit, a safe sleep environment survey was administered, infant sleep practices were observed, and mothers trained to take and submit standard infants’ sleep environment photographs. Photographs were independently assessed for inter-rater reliability (IRR) across five sleep safety domains (primary outcome): sleep location, surface, position, presence of soft items, and hazards near the sleep area. Expert and novice coders IRR was measured using Cohen’s kappa coefficient (K). Sleep safety correlation between photographs and observation, and parent report and observation was determined.

Sixteen (57.1%) mothers completed the home visit. Most parents reported infants sleeping supine (78.5) in parents’ bedroom (85.9%). Photographs demonstrated sleep position, soft items without the baby present, and hanging toys had perfect agreement across all three coder pairs. Safe sleep experts’ IRR demonstrated perfect agreement for sleep location, position, and soft items. While 83.8% of parents were observed putting their infants down to sleep on their back, 78.5% of parents reported doing the same and 82.4% of the photographs demonstrated supine infant sleep position.

Using photographs, coders can reliably categorize some key infant sleep safety aspects, and photograph sleep safety is comparable to parent report and direct observation.

Hyperbilirubinemia is common in the neonatal period; however, delayed diagnosis or inadequate treatment can cause irreparable damage to the neonates. We aimed to evaluate the efficacy of oral fenofibrate for hyperbilirubinemia in term neonates.

This single-blind randomized controlled trial included 86 term neonates aged 3–7 days, with birth weight ≥2500 g, admitted to Bandar Abbas Children’s Hospital, Bandar Abbas Iran, from July 23, 2019, to July 22, 2020. The fenofibrate group received 10 mg/kg oral fenofibrate and phototherapy, while controls only received phototherapy. Serum total bilirubin was measured at 24 and 48 h and at the time of discharge. Hospital length of stay was also noted.

The two study groups were comparable regarding age, gender, gestational age, birth weight, and baseline total serum bilirubin levels. Serum total bilirubin levels at 48 h (P < 0.001) and at discharge (P < 0.001) were significantly lower in the fenofibrate group compared to controls. Although hospital length of stay was lower in the fenofibrate group compared to controls, the difference was not statistically significant (P = 0.612). Fenofibrate was more effective on the reduction of serum bilirubin in neonates aged 3–4.5 days starting at the 24th hour. Moreover, it was more effective in female neonates compared to males starting at the 48th hour.

A single dose of oral fenofibrate reduced total serum bilirubin in term neonates with hyperbilirubinemia without any side effects; however, this effect was more prominent after 48 h.

Arkansans have some of the worst breast cancer mortality to incidence ratios in the United States (5th for Blacks, 4th for Whites, 7th overall). Screening mammography allows for early detection and significant reductions in mortality, yet not all women have access to these life-saving services. Utilization in Arkansas is well below the national average, and the number of FDA-approved screening facilities has decreased by 38% since 2001. Spatial accessibility plays an important role in whether women receive screenings.

We use constrained optimization models within a geographic information system (GIS) to probabilistically allocate women to nearby screening facilities, accounting for facility capacity and patient travel time. We examine accessibility results by rurality derived from rural–urban commuting area (RUCA) codes.

Under most models, screening capacity is insufficient to meet theoretical demand given travel constraints. Approximately 80% of Arkansan women live within 30 minutes of a screening facility, most of which are located in urban and suburban areas. The majority of unallocated demand was in Small towns and Rural areas.

Geographic disparities in screening mammography accessibility exist across Arkansas, but women living in Rural areas have particularly poor spatial access. Mobile mammography clinics can remove patient travel time constraints to help meet rural demand. More broadly, optimization models and GIS can be applied to many studies of healthcare accessibility in rural populations.

Non-clinical aspects of life, such as social, environmental, behavioral, psychological, and economic factors, what we call the sociome, play significant roles in shaping patient health and health outcomes. This paper introduces the Sociome Data Commons (SDC), a new research platform that enables large-scale data analysis for investigating such factors.

This platform focuses on “hyper-local” data, i.e., at the neighborhood or point level, a geospatial scale of data not adequately considered in existing tools and projects. We enumerate key insights gained regarding data quality standards, data governance, and organizational structure for long-term project sustainability. A pilot use case investigating sociome factors associated with asthma exacerbations in children residing on the South Side of Chicago used machine learning and six SDC datasets.

The pilot use case reveals one dominant spatial cluster for asthma exacerbations and important roles of housing conditions and cost, proximity to Superfund pollution sites, urban flooding, violent crime, lack of insurance, and a poverty index.

The SDC has been purposefully designed to support and encourage extension of the platform into new data sets as well as the continued development, refinement, and adoption of standards for dataset quality, dataset inclusion, metadata annotation, and data access/governance. The asthma pilot has served as the first driver use case and demonstrates promise for future investigation into the sociome and clinical outcomes. Additional projects will be selected, in part for their ability to exercise and grow the capacity of the SDC to meet its ambitious goals.

The Clinical and Translational Science Award (CTSA) institutions are increasing development of training programs in community-engaged research (CEnR) to support translational science.

This study sampled posters at CTSA national meetings to identify CEnR training approaches, topics, and outcomes.

Qualitative analysis of 30 posters revealed training topics and outcomes focused primarily on CEnR capacity building, overcoming barriers, systems change, and sustainability.

Further research should focus on development and results of CTSA CEnR training program metrics.

In order to fully participate in informed consent, patients must understand what it is that they are agreeing, or not agreeing, to. In most cases, patients look to their clinicians to help develop the appropriate understanding required to give informed consent. Often the quality of the information available as well as the delivery methods are not optimal.

Using a visual aid as an adjunct to risk communication in a stressful setting as the Emergency Department has a clear potential in facilitating the communication process. To support more accurate and consistent presentation of risk, we formed a team with implementation scientists, patient education specialists, nurses, physicians, and professional designers to transform the information available into a 6th grade reading level visual aid tool. We applied a DMAIC (Define, Measure, Analyze, Improve and Control) process to design the tool. We measured and analyzed its effectiveness through feedback from providers, patients, and caregivers. This cycle happened 3 times until we reached the final version of the visual aid.

We utilized a DMAIC methodology as well as modified Delphi method to create and refine a visual aid tool. Several rounds of end-user feedback along with DMAIC allowed us to create a tool that was consistently better with each round of development, analysis and feedback. After arriving at the final version of the tool, we surveyed physicians in our Emergency Department. We measured the difficulty to understand the information, whether doctors think the visual aid will help patients to understand the data, and the appropriateness of the tool’s length and the amount of information in it.

We believe that our experience can be replicated by other researchers and clinicians in the endeavor of translating the evidence into clinical practice. An effort should be made to fully translate research findings until the end of the research to practice continuum in order to better translate knowledge into a useful and useable form for informed consent decisions in busy clinical practice.

The Great CTSA Team Science Contest (GTSC) was developed to discover how Clinical and Translational Science Award (CTSA) hubs promote and support team science [1]. The purpose of this study was a secondary qualitative analysis of the GTSC submissions to better understand the diversity of team science initiatives across the CTSA consortium.

Secondary qualitative analysis of the GTSC data addressed the following research questions, which defined the top-level coding: (1) What CTSA component sponsored it? (2) Who was the team doing the work? (3) Who were the intended beneficiaries? (4) What was the intended outcome? (5) What strategies did they use? (6) What translational science (TS) stage was addressed? (7) How do they align with the NCATS team science strategic goals? (8) How do the CTSA’s team science efforts align with the National Academies Research Council (NRC) recommendations for enhancing the effectiveness of team science?

The GTSC received 170 submissions from 45 unique CTSA hubs. Qualitative analysis revealed a great variety of team science strategies for virtually all team science stakeholders. In addition to strategies to promote team science, results show successful examples that focus on outcomes and illustrate ways of measuring success.

The GTSC shows that the CTSA consortium is involved in an extremely diverse array of team science activities, which align well with both the NRC recommendations for enhancing the effectiveness of team science and the NCATS strategic goals for team science. Future research should evaluate the efficacy of team science strategies.