Participant Engagement Research Articles

“New Normal:” Opportunities and Challenges Faced by Syringe Service Programs Following the Effects of the COVID-19 Pandemic

Background Syringe services programs (SSPs) provide critical evidence-based public health services that decrease harms from drug use for people who use drugs (PWUD). Many SSPs have experienced significant and evolving COVID-19-related disruptions. We aimed to characterize the impacts of COVID-19 on SSP operations in the United States approximately two years into the pandemic. Methods Participating sites, selected from a national sample of SSPs, completed a semi-structured interview via teleconference and brief electronic survey evaluating the impacts of COVID-19 on program operations. Data collection explored program financing, service delivery approaches, and perspectives on staff morale two years into the pandemic. Interview data were analyzed qualitatively using Rapid Assessment Process. Survey data were analyzed using descriptive statistics and triangulated with qualitative findings. Results Twenty-five SSPs completed the interview and survey between April – June 2022. Triangulation of qualitative and quantitative data characterized the dynamic ways that demand for SSP services has evolved throughout the pandemic, and how approaches to care delivery have increased in flexibility and participant-centeredness. However, SSPs expressed worry about longer-term barriers to program participant and staff engagement, and a mismatch between available programmatic resources and the “new normal” of service delivery needs. Conclusion The COVID-19 pandemic has had lasting impacts on multiple facets of syringe service delivery. While SSPs consistently meet barriers with ingenuity, greater programmatic and staff support is needed to ensure SSPs can continue to meet the changing public health needs for PWUD.

Achieving better engagement with care and support for young people living with HIV in Australia: a mixed-method enquiry

ABSTRACT Young people aged 18–29 are considered “adult” within the Australian HIV health service context. However, evidence increasingly defines this age group as distinct from the broader adult population such that the needs of young people living with HIV may be overlooked in the context of HIV service design and delivery. This analysis draws on the Young + Positive study, a national study in Australia that documented the perspectives of young people (aged 18–29) living with HIV. Data were collected via survey (n = 60) and interview (n = 25) methods between 2018 and 2019. The data were analysed using descriptive statistics and thematic analysis, exploring the inner- and outer-world factors influencing participant engagement with HIV care and support. Using the multi-dimensional framework by Harms [2021. Understanding human development (3rd ed.). Oxford University Press], we found that both inner- and outer-world factors influenced participants’ ability and motivations to engage with specialist HIV treatment and support. Inner-world factors included psychological outlook, and perceptions of HIV and HIV services. Outer-world factors included workforce competencies of service providers, physical space of the service and hours of service operation. These research findings confirm that opportunities exist to better meet the treatment and care needs of young people living with HIV.

Insight of embodied experience: Influencing tourists’ behavior in mass participant sports event

Sports events hold significant cultural, tourism, and societal value. With the growing popularity of sports events, mass participation sports events (MPSE) have become a focal point of research. Existing literature on MPSE primarily emphasizes the organizational aspects of the events, while the embodied experiences from the participants’ perspective remain underexplored. This study uses the renowned Guangzhou Marathon in southern China as a case study. The objective is to investigate and enhance the understanding of the embodied experiences of MPSE tourists through a quantitative methodology, focusing on the biomechanical aspects of participation. Additionally, this study aims to explore the antecedents and consequences of embodied experiences in relation to physical engagement and movement dynamics. The findings highlight the crucial role of embodied experience in shaping tourists’ perceptions, physical interactions, and subsequent behavioral intentions. Specifically, the research indicates that tourists’ physical experiences impact perceived value, satisfaction, and loyalty intentions through both moderating and mediating effects. The study also emphasizes the importance of understanding the biomechanics of movement during events, which can enhance participant engagement and overall satisfaction. Sustainable event management strategies that consider the biomechanical implications of participant experiences are also proposed.

Extended Reality Gaming for Exercise and Mindfulness Throughout Pediatric Cancer Rehabilitation: Protocol for a Randomized Controlled Trial.

Pediatric patients with cancer have limited options to self-manage their health while they are undergoing treatments in the hospital and after they are discharged to their homes. Extended reality (ER) using head-mounted displays has emerged as an immersive method of improving pain and mental health and promoting health-enhancing physical activity among a variety of clinical groups, but there is currently no established protocol for improving both physical and mental health in pediatric cancer rehabilitation. This phase I, pilot, feasibility randomized controlled trial aims to investigate the potential effects of a 14-week ER program on physical activity participation and indicators of health among pediatric patients with cancer who undergo bone marrow transplantation. An ancillary aim is to evaluate the feasibility of the program through participant engagement. This study includes a 2-arm parallel group design with a 1-group crossover (the control group will start the intervention after a waiting period). Overall, 16 pediatric patients with cancer undergoing rehabilitation (aged ≥8 years) at a children's hospital will be randomly allocated into one of two groups: (1) an immediate start group that undergoes an ER program in the hospital until discharge and then for 8 weeks at home (total duration of approximately 14 weeks), and (2) a waitlist control group that undergoes usual care in the hospital and for 8 weeks at home, before receiving the 8-week home ER program. The program will include active video gaming with rhythmic music exercises as well as mindfulness-based practices using a high-quality app. Home-based programming will include behavioral coaching calls. Physical activity will be measured daily through step counts using a tri-axial accelerometer. Health outcomes will be measured across time and include global health, measured by the National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric Global Health Scale Short Form 7+2, and lung function, measured by a forced expiratory volume using a peak flow meter. Feasibility will be evaluated through participant engagement metrics, such as enrollment, dropout, adverse events, and attendance rates. Descriptive statistics will be obtained for all study variables. Outcomes will be modeled using mixed modeling procedures, and changes in means will be estimated with CIs. The study was funded in February 2024. Recruitment procedures started on June 27, 2024. All data are anticipated to be collected by February 2026. Full trial results are anticipated to be analyzed and submitted for publication by March 2026. The study's anticipated end date is March 31, 2026. This trial tests an accessible remote program for improving both physical and mental health among pediatric patients with cancer. The knowledge obtained from this study will inform the development of a larger trial. ClinicalTrials.gov NCT06298357; https://clinicaltrials.gov/study/NCT06298357. DERR1-10.2196/64879.

Effectiveness and feasibility of a theory-informed intervention to improve Mediterranean diet adherence, physical activity and cognition in older adults at risk of dementia: the MedEx-UK randomised controlled trial.

Despite an urgent need for multi-domain lifestyle interventions to reduce dementia risk, there is a lack of interventions which are informed by theory- and evidence-based behaviour change strategies, and no interventions in this domain have investigated the feasibility or effectiveness of behaviour change maintenance. We tested the feasibility, acceptability and cognitive effects of a personalised theory-based 24-week intervention to improve Mediterranean diet (MD) adherence alone, or in combination with physical activity (PA), in older-adults at risk of dementia, defined using a cardiovascular risk score. Participants (n = 104, 74% female, 57-76 years) were randomised to three parallel intervention arms: (1) control, (2) MD, or (3) MD + PA for 24weeks and invited to an optional 24-week follow-up period with no active intervention. Behaviour change was supported using personalised targets, a web-based intervention, group sessions and food provision. The primary outcome was behaviour change (MD adherence and PA levels), and the secondary outcomes included feasibility and acceptability, cognitive function, cardiometabolic health (BMI and 24-h ambulatory blood pressure) and process measures. The intervention was feasible and acceptable with the intended number of participants completing the study. Participant engagement with group sessions and food provision components was high. There was improved MD adherence in the two MD groups compared with control at 24weeks (3.7 points on a 14-point scale (95% CI 2.9, 4.5) and 48 weeks (2.7 points (95% CI 1.6, 3.7)). The intervention did not significantly change objectively measured PA. Improvements in general cognition (0.22 (95% CI 0.05, 0.35), memory (0.31 (95% CI 0.10, 0.51) and select cardiovascular outcomes captured as underpinning physiological mechanisms were observed in the MD groups at 24 weeks. The intervention was successful in initiating and maintaining dietary behaviour change for up to 12months which resulted in cognitive benefits. It provides a framework for future complexbehaviour change interventions with a range of health and well-being endpoints. ClinicalTrials.gov NCT03673722.

L’utilisation de ChatGPT 3.5 pour la rétroaction corrective écrite interactive en enseignement-apprentissage du français langue seconde : une étude exploratoire

Generative artificial intelligence (GenAI) tools are becoming increasingly accessible, which makes it imperative to critically examine their potential impact in the educational environment, as well as the ways in which they can be integrated to enable learners to benefit from them. ChatGPT (OpenAI, 2022) is a conversational GenAI tool with which users can interact. The interactive nature of this tool seems to suggest affordances in language teaching and learning, specifically for textual revision. This exploratory study focuses on the use of ChatGPT for interactive written corrective feedback (WCF) in French as a second language. Participants (n=22) were French as a second language learners in a second-year university course. They first answered a questionnaire about their self-corrective practices for French writing tasks. Then, during a one-off intervention, they interacted with ChatGPT to solicit interactive WCF during synchronous exchanges. Finally, the participants answered a questionnaire about this experience and their perceptions of AI. A taxonomic analysis (Bilmes, 2009) within the framework of a qualitative content analysis (Selvi, 2019) was undertaken to develop typologies to classify the messages in the collected discussion threads. The quality of ChatGPT’s responses was also analyzed. The results show that many different types of prompts were created, but there were discrepancies in the degree of participant engagement. That said, the vast majority of participants claim to have benefited from this experience. ChatGPT’s responses were largely correct and appropriate, but the quality of the prompt was found to affect the quality of the response it solicits. The results of this study seem to demonstrate that ChatGPT could be a useful tool for interactive WCF in French language learning, however, more research is needed.

Addressing Disparities Using Continuous Glucose Monitors and Remote Patient Monitoring for Youth With Type 1 Diabetes.

Youth with type 1 diabetes (T1D) and public insurance have lower diabetes technology use. This pilot study assessed the feasibility of a program to support continuous glucose monitor (CGM) use with remote patient monitoring (RPM) to improve glycemia for youth with established T1D and public insurance. From August 2020 to June 2023, we provided CGM with RPM support via patient portal messaging for youth with established T1D on public insurance with challenges obtaining consistent CGM supplies. We prospectively collected hemoglobin A1c (HbA1c), standard CGM metrics, and diabetes technology use over 12 months. The cohort included 91 youths with median age at enrollment 14.7 years, duration of diabetes 4.4 years, 33% non-English speakers, and 44% Hispanic. Continuous glucose monitor data were consistently available (≥70%) in 23% of the participants. For the 64% of participants with paired HbA1c values at enrollment and study end, the median HbA1c decreased from 9.8% to 9.0% (P < .001). Insulin pump users increased from 31 to 48 and automated insulin delivery users increased from 11 to 38. We established a program to support CGM use in youth with T1D and barriers to consistent CGM supplies, offering lessons for other clinics to address disparities with team-based, algorithm-enabled, remote T1D care. This real-world pilot and feasibility study noted challenges with low levels of protocol adherence and obtaining complete data in this cohort. Future iterations of the program should explore RPM communication methods that better align with this population's preferences to increase participant engagement.

Readiness planning: how to go beyond “buy-in” to achieve curricular success and front-line performance

AbstractSimulation program staff and leadership often struggle to partner with front-line healthcare workers, their managers, and health system leaders. Simulation-based learning programs are too often seen as burdensome add-ons rather than essential mechanisms supporting clinical workforce readiness. Healthcare system leaders grappling with declining morale, economic pressure, and too few qualified staff often don’t see how simulation can help them, and we simulation program leaders can’t seem to bridge this gap. Without clear guidance from front-line clinicians and leaders, the challenge of building and maintaining sustainably relevant simulation offerings can seem overwhelming. We argue that three blind spots have limited our ability to see the path to collaborations that support front-line workforce readiness: We wrongly assume that our rigor in designing and delivering programs will lead to front-line participant engagement and positive impact, we overestimate the existence of shared priorities, mindsets, and expertise with our would-be partners, and we contribute to building a façade of superficial education compliance that distracts from vital skill development. How do we design simulation-based training programs that are valued, supported, and sustained by key partners over time? (1) By seeing ourselves as partners first and designers second; (2) by using a boundary spanning design process that shifts the primary psychological ownership of training outcomes to our partners; and (3) by focusing this shared design process on workforce readiness for the situations that our healthcare partners care about most. Drawing on lessons from more than 800 readiness plans developed by participants in our courses and the authors’ successes and mistakes in partnering with healthcare teams for front-line readiness, we introduce the concepts, commitments, and practices of “readiness planning” along with three detailed examples of readiness planning in action. Graphical Abstract

ADNI Private Partners Scientific Board (PPSB) Diversity, Equity, and Inclusion (DE&I) Working Group: A new collaboration that crosses boundaries for industry, academia, and under-represented patients.

The Alzheimer's Disease Neuroimaging Initiative (ADNI) Private Partners Scientific Board (PPSB) Diversity, Equity, and Inclusion Working Group (DE&I WG) was established to work with the ADNI3 Diversity Task Force to provide an industry perspective on increasing the representation of diverse participants in ADNI3 and to build precompetitive cross-industry knowledge in engagement and recruitment of under-represented participants (URPs). In this article, we review and highlight the role and ongoing activities within the ADNI PPSB DE&I WG and provide a cross-industry perspective on areas where precompetitive collaboration can improve the inclusiveness in clinical trials, drawing on examples from ADNI4. HIGHLIGHTS: New collaboration crosses boundaries to allow PPSB DE&I WG members to work together in a preproprietary way. When faced with the same challenges required by FDA combined with a growing prevalence of AD, the DE&I WG has drafted a range of initiatives that may benefit ADNI, AD patients, care partners, and respective companies involved in this work. In order to address the multifactorial problem of successfully enrolling representative populations in clinical trials, it will "take a village" to bring about sustainable changes.

Residents’ Participation and Spatial Engagement in the Context of Socio-Spatial Planning of Enlarged Communities of the Republic of Armenia

The effectiveness of socio-spatial planning implemented in the settlements of enlarged com-munities, in addition to professional abilities, also depends on the positive positioning of the broad social strata towards the implemented changes. One of the primary factors underlying these positionings is the desire to participate in the implementation of changes and decision-making in their own settle¬ments.The concept of socio-spatial planning, deve¬loped by Erdiaw-Kwasie and Basson, is defined as a “…branch of planning focused on understanding why different groups of people embrace, contest or reject spatial changes, how they take a lead in shaping their own space, and ways to make themactive in spatial transformations” .

Blurred lines of participation: nexus analytical tools for reflecting on the roles of researchers and participants in change-oriented research projects

Abstract This article discusses nexus analysis (NA) as a research strategy that provides specific tools for reflecting on the roles of researchers and participants in participatory research. While many research traditions use participatory methods and problematise what it means to participate in research, thus far the potential of nexus analytical concepts as tools to mediate such a reflection has not been discussed explicitly. In order to illustrate how NA promotes such reflections, we draw on four linguistic projects in multilingual settings that deal with (1) preservice teachers’ learning to design for language learning in hybrid environments on a university course, (2) plurilingual and collaborative teaching approaches to writing in language classrooms in secondary schools, (3) language socialisation of migrant mothers, and (4) family language policy in single-parent families. With this article, we demonstrate how the nexus analytical conceptual tools of ‘zone of identification’, ‘historical body’ and ‘interaction order’ facilitate reflection upon the researcher’s participatory engagement in various stages of the research process. We show that the lines between the roles of researchers and participants are blurry, in particular in research projects that focus on introducing social change. Additionally, we highlight the importance of reflecting on power relations between researchers and participants and how control over project direction and decisions can impact the representation and involvement of community members.

Comparing Synchronous and Asynchronous Remotely Delivered Lifestyle Interventions: Protocol for a Randomized Noninferiority Trial.

Remotely delivered lifestyle interventions have emerged to increase the reach and accessibility of traditional interventions that involve numerous in-person visits. Remote interventions can be delivered synchronously via videoconference software or phone or asynchronously via online platforms. Asynchronously delivered interventions are convenient and flexible in that they allow people to participate at any time and as such, they may be more sustainable. Evidence for asynchronous interventions is needed given their potential for convenience and sustainability, which may have implications for weight loss maintenance. This is a randomized noninferiority trial comparing 2 remotely delivered lifestyle interventions: one that is delivered synchronously via videoconference meetings and one that is delivered asynchronously through private Facebook (Meta) groups. We hypothesize that the percent weight loss difference between conditions at 6 and 12 months will be less than 2% and that the asynchronous condition will cost less to deliver per pound lost. We also hypothesize that engagement will be higher in the asynchronous condition at 12, 18, and 24 months and that the asynchronous condition will have greater weight loss at 24 months. We will randomize 328 participants with overweight or obesity to a remotely delivered lifestyle intervention that is delivered either synchronously or asynchronously. Delivery of the synchronous lifestyle intervention will be via videoconference group sessions, whereas the delivery of the asynchronous lifestyle intervention will be via private Facebook groups. The lifestyle intervention in both conditions is based on the Diabetes Prevention Program. The intervention goals are to lose 5%-10% of baseline weight and to work toward 300 minutes per week of moderate intensity physical activity. The core intervention will last for 12 months and be led by counselors in each group. This will be followed by a 12-month maintenance phase to be led by participant volunteers from each group. Participant engagement and weight loss maintenance will be assessed during this phase. The primary outcome is mean percent weight loss at 6 and 12 months. The noninferiority margin for differences in weight loss between conditions is 2% at both 6 and 12 months. We will model percent weight loss at 6 and 12 months using general linear regression models with the intent-to-treat sample. Secondary outcomes include engagement, collective efficacy, cost, and weight loss at 18 and 24 months. The funding period began on August 17, 2023, and the study was approved by the University of Connecticut Institutional Review Board on August 17, 2023. Participant recruitment will begin December 2024 and the intervention will begin February 2024. If hypotheses are confirmed, this work will provide evidence that asynchronously delivered remote interventions are as efficacious as synchronously delivered ones and more sustainable such that people will engage in them longer and retain more weight loss for less cost. ClinicalTrials.gov NCT06393725; https://tinyurl.com/4kzzwkc9. PRR1-10.2196/65323.

Patient Engagement in Providing Telehealth SUD IOP Treatment: A Retrospective Cohort Study.

Substance use disorders (SUDs) remain a growing public health issue, with drug- and alcohol-related deaths continuing to increase. A myriad of barriers prevent many with SUDs from seeking care. Telehealth interventions are well-positioned to reduce barriers and increase engagement in SUD treatment. The SUD intensive outpatient program (IOP) is specifically designed for telehealth and offers evidenced-based care delivered by SUD professionals as well as asynchronous assignments to enhance treatment. This study explores the feasibility of providing a telehealth IOP. participant engagement, reasons for disengagement, and days of abstinence were examined using existing records from a cohort of participants between 2021 and 2023 (n = 4724). Nearly 80% of participants remained engaged in the program for 30 days, and 91% attained at least 30 consecutive days of abstinence over the course of treatment. Nearly 45% demonstrated a successful response to care and no longer required IOP treatment. Those who finished the IOP completed over 70% of the asynchronous assignments. Results support the feasibility and effectiveness of delivering a telehealth IOP for SUDs.

Extending the Calgary Audit and Feedback Framework into the virtual environment: a process evaluation and empiric evidence

BackgroundThe Calgary Audit and Feedback Framework (CAFF) is a pragmatic, evidence-based approach for the design and implementation of in-person social learning interventions using Audit and Group Feedback (AGF). This report describes extension of CAFF into the virtual environment as part of a multifaceted intervention bundle to reduce redundant daily laboratory testing in hospitals. We evaluate the process of extending CAFF in the virtual environment and share resulting evidence of participant engagement with planning for practice change.MethodsWe describe an innovative virtually facilitated AGF intervention based on the CAFF. The AGF intervention was part of an intervention bundle which included individual physician laboratory test utilization reports and educational tools to reduce redundant daily laboratory testing in hospitals. We used data from recorded and transcribed virtual AGF sessions, post AGF session surveys and detailed field notes maintained by project team members. We used simple descriptive statistics for quantitative data and analyzed qualitative data according to the elements of CAFF.ResultsEighty-three physicians participated over twelve virtual AGF sessions conducted across four tertiary care hospitals during the study period. We demonstrate that all prerequisite activities for CAFF (relationship building, question choice and data representation) were present in every virtual AGF session. Virtual facilitation was effective in supporting the transition of participants through different steps of CAFF in each session to lead to change talk and planning. All participants contributed to discussion during the AGF sessions. The post AGF session surveys were filled by 66% of participants (55/83), with over 90% of respondents reporting that the session helped them improve practice. 46% of participants (38/83) completed personal commitment to change forms at the end of the sessions.ConclusionsVirtual AGF sessions, developed and implemented with fidelity to the CAFF approach, successfully engaged physicians in a group learning environment that led to change planning. Further studies are needed to determine the generalizability of our findings and to add to the literature on evidence-based virtual facilitation techniques.

Characteristics of people with type 1 diabetes influence the educational process for starting insulin pump therapy: an observational study.

Limited data exist on educational programs for people using insulin pump (IP) therapy or those considering its initiation, and the influence of individual characteristics on their educational pathway remains unclear. Our aim was to analyze the characteristics of people with type 1 diabetes (T1D) referred for IP therapy and how these characteristics may influence their educational process. A retrospective descriptive observational study was carried out on people with T1D referred for participation in a structured pre-IP educational program in a hospital setting. Educational, sociodemographic and clinical variables were collected and analyzed. Participants were followed up 5 years after IP placement. Seventy-one people finalized the educational program, of whom 10 experienced major barriers to completing it. People with lower educational level required more sessions and weeks to complete it compared to those with higher educational levels. People referred due to suboptimal metabolic control and hypoglycemia also required more time to complete the process. It is essential for diabetes educators to recognize the diversity of characteristics, needs and challenges among the participants in an educational program. Based on this, they must adapt strategies to provide more effective, person-centered diabetes education and support, fostering positive and sustained outcomes and engagement for participants.

Influence of Citizens’ Participation on Human Security in Nyamyumba Sector of Rubavu District in Rwanda

The purpose of this study was to examine the influence of citizens' participation on human security in Nyamyumba sector of Rubavu District in Rwanda. Despite efforts to improve human security in Nyamyumba sector, challenges persist, particularly in areas of citizen involvement and women's participation. The specific impact of citizens' participation on human security in this context remained insufficiently understood. Democratization theory was used to guide the study. The study employed mixed methods, using both qualitative and quantitative approaches with descriptive and correlation research designs. A target population of 30,851 people was used; with a sample size of 407 respondents selected using Yamane's (1967) formula. Data were collected through questionnaires, interviews, focus group discussions, and document analysis. Quantitative data were analyzed using SPSS version 27, while qualitative data underwent thematic analysis. The findings revealed that 83.7% of respondents agreed that there is a requirement to empower women in various activities in Nyamyumba sector. This implies that setting out the requirements to empower women helps the local leaders to be objective while empowering women. The study also found that the variables like framework, accountability and participation in neighbourhood security influence 53.9% of human security. It was also found that local citizens in Nyamyumba sector participate in Irondo as a social service to maintain security in the area, organized at the household level. The study concludes that there is a statistically significant relationship between citizens' participation and human security. However, the level of public participation and citizen's engagement in human security decision making processes tends to be low in Nyamyumba sector. The study recommends that there should be strategies to enhance the wealth of youths, which could lead to sustainable future families and improved human security.

Enhancing Research Through Image Analysis Workshops: Experiences and Best Practices.

Modern microscopy systems allow researchers to generate large volumes of image data with relative ease. However, the challenge of analyzing these data effectively is often hindered by a lack of computational skills. This bottleneck negatively impacts both research reproducibility and efficiency, as researchers frequently rely on manual or semi-automated analysis methods. Interactive image analysis workshops offer a valuable solution, equipping researchers with the skills and tools needed to automate image processing tasks. In this paper, we share our experiences and best practices from conducting such workshops, which emphasize the use of open-source software like ImageJ, FIJI, and Python-based tools such as JupyterLab and napari. We discuss key considerations for workshop design, logistics, and outcomes, while highlighting common pitfalls to avoid. Using two recent workshops as case studies, we also present strategies for optimizing participant engagement and learning. Our insights offer practical guidance for planning and conducting image analysis workshops and serve as a starting point for researchers looking to establish similar training initiatives and enrich their local imaging communities.

Key factors in complex public health interventions to address vaccine hesitancy using a multidisciplinary approach: the VAX-TRUST project.

The VAX-TRUST project addresses vaccine hesitancy in seven European countries with a systematic and evidence-based approach. Interventions, targeting healthcare professionals, draw from behavioural and social theories. A checklist, inspired by the TIDieR (Template for Intervention Description and Replication), ensures a detailed description of actions, transparency and replicability. The intervention development process begins with collaborative meetings and systematic revisions, concluding with external evaluations for replicability in diverse public health contexts. This study aims to provide valuable insights for future complex interventions in public health, based on lessons learnt to reduce the risk of vaccine-preventable diseases. The analysis of educational interventions within the VAX-TRUST project has led to the definition of precise guidelines to ensure their replicability and adaptation to various contexts, attempting to establish a universally applicable approach. Active participant engagement and consideration of local social dynamics, beyond information transmission, have emerged as key factors to improve intervention effectiveness. Various educational tools and collaboration with academic institutions have contributed to strengthening credibility.

Digital Health Platform for Maternal Health: Design, Recruitment Strategies, and Lessons Learned From the PowerMom Observational Cohort Study.

Maternal health research faces challenges in participant recruitment, retention, and data collection, particularly among underrepresented populations. Digital health platforms like PowerMom (Scripps Research) offer scalable solutions, enabling decentralized, real-world data collection. Using innovative recruitment and multimodal techniques, PowerMom engages diverse cohorts to gather longitudinal and episodic data during pregnancy and post partum. This study aimed to evaluate the design, implementation, and outcomes of the PowerMom research platform, with a focus on participant recruitment, engagement, and data collection across diverse populations. Secondary objectives included identifying challenges encountered during implementation and deriving lessons to inform future digital maternal health studies. Participants were recruited via digital advertisements, pregnancy apps, and the PowerMom Consortium of more than 15 local and national organizations. Data collection included self-reported surveys, wearable devices, and electronic health records. Anomaly detection measures were implemented to address fraudulent enrollment activity. Recruitment trends and descriptive statistics from survey data were analyzed to summarize participant characteristics, assess engagement metrics, and quantify missing data to identify gaps. Overall, 5617 participants were enrolled from 2021 to 2024, with 69.8% (n=3922) providing demographic data. Of these, 48.5% (2723/5617) were younger than 35 years, 14% (788/5617) identified as Hispanic or Latina, and 13.7% (770/5617) identified as Black or African American. Geographic representation spanned all 50 US states, Puerto Rico, and Guam, with 58.3% (3276/5617) residing in areas with moderate access to maternity care and 16.4% (919/5617) in highly disadvantaged neighborhoods based on the Area Deprivation Index. Enrollment rates increased substantially over the study period, from 55 participants in late 2021 to 3310 in 2024, averaging 99.4 enrollments per week in 2024. Participants completed a total of 17,123 surveys, with 71.8% (4033/5617) completing the Intake Survey and 12.4% (697/5617) completing the Postpartum Survey. Wearable device data were shared by 1168 participants, providing more than 378,000 daily biometric measurements, including activity levels, sleep, and heart rate. Additionally, 96 participants connected their electronic health records, contributing 276 data points such as diagnoses, medications, and laboratory results. Among pregnancy-related characteristics, 28.1% (1578/5617) enrolled during the first trimester, while 15.1% (849/5617) reported information about the completion of their pregnancies during the study period. Among the 913 participants who shared delivery information, 56.1% (n=512) had spontaneous vaginal deliveries and 17.9% (n=163) underwent unplanned cesarean sections. The PowerMom platform demonstrates the feasibility of using digital tools to recruit and engage diverse populations in maternal health research. Its ability to integrate multimodal data sources showcases its potential to provide comprehensive maternal-fetal health insights. Challenges with data completeness and survey attrition underscore the need for sustained participant engagement strategies. These findings offer valuable lessons for scaling digital health platforms and addressing disparities in maternal health research. ClinicalTrials.gov NCT03085875; https://clinicaltrials.gov/study/NCT03085875.

Participatory engagement to reduce communication gaps

Participatory engagement to reduce communication gaps