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Objectives/Goals: Despite significant advancements, adolescent and young adult (AYA) patients with hematologic malignancies continue to have inferior improvement in survival over time compared to their younger and older peers. This project assesses which patient and neighborhood characteristics are associated with clinical trial enrollment in this population. Methods/Study Population: We will perform a retrospective study of individuals, aged 15–39, diagnosed and treated at Children’s Healthcare of Atlanta (CHOA) or Winship Cancer Institute for hematologic malignancies between 2011 and 2023. Our primary exposure variables will be race/ethnicity, the area deprivation index (ADI), and the index of concentration at the extremes (ICE). The primary study outcome will be enrollment in an open frontline therapeutic clinical trial (yes vs. no). Our analyses will estimate the crude and adjusted odds ratio of clinical trial enrollment according to race/ethnicity, ADI, and ICE; these analyses will be adjusted for co-variables of interest (e.g. patient primary language, and insurance provider). As a secondary analysis, we will further subdivide the patients by treatment location and by age tertiles. Results/Anticipated Results: Our study team completed preliminary work looking at institutional clinical trial enrollment in a pediatric-only (Discussion/Significance of Impact: We expect that this study conducted in a large, diverse AYA cohort will reveal key associations about likelihood of clinical trial enrollment. Once these associations are known, we can develop and test interventions –such as augmented social work involvement and assistance with transportation– to mitigate the effect of amenable risk factors.
Objectives/Goals: To guide UCSF in adopting a justice-based, patient-informed model of health data sharing that moves beyond traditional regulatory frameworks that focus on individual privacy and do not address public good and health equity; to create a roadmap for UCSF to implement transparent, community-engaged data governance that is both responsible and effective. Methods/Study Population: We conducted 24 hours of observation at outpatient clinics and 75 in-depth interviews with multiple stakeholder groups: patients, community advisors, and UCSF faculty and staff involved in managing and governing health and research-generated data. We used an ethnographic approach to investigate health data sharing policies and practices and explore perspectives on data governance. We were particularly interested in how data sharing is explained to patients, and what patients and community members know and think about how patient data may be used other than for clinical care. We explored faculty, staff, patient, and community member perspectives about the potential involvement of patients/communities in data governance. We also reviewed UCSF websites with information about data use and sharing policies. Results/Anticipated Results: Policy Awareness: Clear communication and improved guidelines for data use policies will enhance awareness among patients, the public, and researchers, boosting UCSF’s credibility as a data steward. Risks/Benefits: Data sharing drives scientific and clinical progress but raises concerns about privacy, profiteering, and unequal benefit distribution. Improving the Data Ecosystem: Safe data sharing and public benefit can be strengthened through centralized governance and better communication. Key growth areas include deidentification, external sharing criteria, and leakage prevention. Shared Governance: Patients and community advisors favor shared governance with public involvement, while UCSF informants were equivocal. All are concerned about equitable representation and technical training challenges. Discussion/Significance of Impact: Our recommendations to University leadership: Improve communication of data sharing policies to patients and the public. Involve patients and the public in data governance. Support investigators to ensure understanding and compliance with data use policies. Hold UCSF and collaborators accountable for transparency, equity, and public benefit.
Objectives/Goals: • To examine current barriers to research translation that collide with funder imperatives to share research results broadly. • To create community-driven guidance on broadening dissemination of research findings to communities to enhance health literacy and trustworthiness in the research process. Methods/Study Population: The Penn State Community Health Equity & Engagement in Research team, part of our Clinical and Translational Science Institute, completed six semi-structured focus groups in the Fall of 2023 (N = 46, including geographically diverse communities with and without research experience). Focus groups included presentation of evidence-based and novel approaches to lay results dissemination, including lay briefs and data walks, to elucidate experiences with and preferences for receiving research study results. Qualitative data were analyzed using MAXQDA software, with successful (>0.70) kappa coefficient achieved for interrater reliability. Codes and themes were developed inductively. Results/Anticipated Results: Focus group characteristics included N = 39 identifying as women, with a mean age of 56 years old and 10% identifying as Black/African American. Geographic breakdown included 49% rural, 44% suburban, and 7% urban. Thematic analyses demonstrated a perceived lack of trustworthiness and representation in the research process, with several cultural and geographic barriers to research accessibility and results dissemination. The majority of participants did not receive research results from prior studies and identified the importance of trusted community messengers to share findings broadly. Participants prefer receiving lay briefs, with health literate infographics, over published study manuscripts. Data walks featuring key findings presented by researchers within communities were highly desired. Discussion/Significance of Impact: Improving translation of study results in underrepresented communities is a catalyst for increasing engagement, demonstrating trustworthiness, and improving health literacy. The development of evidence-based lay dissemination methodologies can increase translation and bolster efforts to support informed, research-ready communities.
Objectives/Goals: Discovery Day aims to bring diverse and underrepresented groups of potential biomedical research participants into research spaces to increase transparency, knowledge of the research process, trust in research, and interest in STEM fields. Methods/Study Population: Discovery Days are one-day events held on Saturdays at a large hospital in the Midwest. Attendees are recruited through flyers, social media, and other media. Recruitment targets communities that are predominantly underrepresented in research, such as Black/African American and Hispanic/Latino. Events included lunch, presentations, interactive lab demonstrations, Q&A sessions, and a tour of the BioBank research facility. Families completed surveys assessing demographics, trust in research, understanding of research, and interest in STEM careers. Descriptive statistics were used to summarize findings. Results/Anticipated Results: At a Discovery Day held in May 2024, 58 individuals attended. Each family (N = 30) completed a 15-item survey. Most (70%) participants identified with diverse racial and ethnic backgrounds, with the largest group identifying as Black/African American. Five diverse neighborhoods were represented, as expected for our recruitment strategy. Following Discovery Day, 73.3% of participants reported their trust in research increased, and 93.1% of participants indicated their understanding of research increased. 37.5% reported interest in learning about STEM jobs or internships, and 100% of participants would recommend Discovery Day to friends and family. Discussion/Significance of Impact: We hope that by increasing transparency and trust around the research process, community members that may benefit from research (e.g., genetic research on chronic diseases) may be more likely to participate. Additional findings and future goals for Discovery Day will be discussed.
Objectives/Goals: The NIH Common Fund launched Community Partnerships to Advance Science for Society (ComPASS) to study ways to reduce health disparities by addressing underlying structural factors within communities. ComPASS was designed for community organizations to lead research that addresses community needs. Methods/Study Population: ComPASS awarded five health equity research hubs (Hubs) to provide specialized technical support to ComPASS research projects led by community organizations. Expertise provided by the Hubs to the community-led projects will focus on specific facets of community health, including nutrition access, health care access, and built environment. The Hubs support community-led piloting and testing of structural interventions within community settings by providing subject matter expertise in areas including structural and multilevel intervention study design and methods, implementation science, and community engagement. Results/Anticipated Results: The Hubs will provide expertise and support to the community-led research projects around one or more social determinants of health domains: health care access and quality, education access and quality, economic stability, social and community context, and neighborhood and built environment. The Hubs will help identify strategies for measuring health outcomes and assessing the effects of structural and contextual factors on intervention outcomes. We anticipate the ComPASS program will lead to a better understanding of how structural interventions that leverage multi-sectoral partnerships can advance health equity. Discussion/Significance of Impact: Through community-led research, ComPASS projects are implementing structural interventions to address social determinants and advance health equity. The technical scientific support rooted in health equity provided by the Hubs is essential to the success of these research projects.
Objectives/Goals: Despite the acknowledgment of post-Ebola syndrome (PES), young EVD survivors have received little attention. The mechanistic drivers and long-term consequences of PES and EVD early in life are unknown. We aim to define PES presentations in pediatric EVD survivors and propose potential mechanistic factors contributing to PES in young people. Methods/Study Population: Here we focus on physical health outcomes in an ongoing cohort study assessing mental and physical health in pediatric EVD survivors (age Results/Anticipated Results: 671 participants were enrolled between 2021 and 2022 (Infected: n = 226, Affected: n = 207, and Control: n = 238). Groups were similar in sex distribution (52.7%, 54.0%, and 53.8% female, respectively) and mean age, although the Infected group was slightly older (14.6 y) than the Affected (13.5 y) and Control groups (14.1 y), a difference unlikely to be clinically significant. Notably, the EVD Infected group exhibited a higher burden of symptoms, with significant findings in cardiac, MSK, ophthalmologic, and “ear, nose, and throat” systems. Principal component analysis showed differential patterns of sequelae across the groups, primarily defined by MSK. Discussion/Significance of Impact: PES is heterogeneous in pediatric EVD survivors. EVD Affected children exhibit a similar yet distinct pattern of clinical sequelae indicating ecological factors impact sequelae and raising questions about the mechanistic drivers of PES in children. Potential mechanisms include inflammation or accelerated aging and immune dysfunction.
Objectives/Goals: Research participants are not representative of our communities. To determine research perceptions, we are recruiting individuals who have and have not participated in studies. We aim to identify trends, capturing motivating factors, access barriers, and participants’ concerns to inform best practices to engage participants. Methods/Study Population: We developed a 25-item survey with a goal of engaging 500 individuals. Survey questions were developed based on published literature of research motivations and barriers, as well as focus groups conducted in our central Pennsylvania community. Survey questions consist of Likert-scale, multiple choice, and free text, with administration through REDCap. Potential survey participants will be recruited from the Penn State Volunteer Repository and through partnering clinical networks, including federally qualified health centers. We will also recruit individuals who have never participated in research to engage underrepresented groups via the Penn State Clinical and Translational Science Institute’s community partner network. Analyses will include Chi-squared tests and binomial logistic regression. Results/Anticipated Results: The primary dependent variable will be past participation in research, while the primary independent variables will be binary responses to questions relating to motivators and barriers to participation in research. Secondary analysis will stratify these comparisons by race or rurality with a subgroup analysis using the same methods as the primary analysis. Based on these analyses, we anticipate that those who have never participated in research will face greater and different barriers than those who have participated in research. We also anticipate that motivators will be similar between to the two groups. We anticipate finding differences in motivators and barriers among different races as well as differences when examining rurality versus non-rurality. Survey results will be available in January. Discussion/Significance of Impact: This will be one of the few studies in the literature focused on uncovering motivators and barriers to research participation. Understanding what motivates and prevents individuals from participating in research is one of the first steps to enhancing the research process so that people want, and are able, to participate in studies.
Objectives/Goals: The prevalence of type 2 diabetes (T2D) in adolescents is rising, presenting unique challenges for recruitment in clinical research – particularly among adolescents who belong to minoritized race/ethnic backgrounds. The primary aims of our study are to identify and address barriers to recruiting adolescents, particularly around community trust. Methods/Study Population: This study employed a two-phase approach to evaluate recruitment strategies for underrepresented adolescent populations in genomics studies of T2D. After IRB approval, in Phase 1, we utilized the electronic medical record (EMR) system at Children’s of Alabama to prescreen based on inclusion criteria (adolescents aged 12–18 years with T2D). Recruitment efforts were tailored to address barriers unique to underrepresented populations, such as flexibility in scheduling contact times to accommodate family availability. In Phase 2, we are implementing and assessing the effectiveness of a peer recruitment model, wherein adolescents from underrepresented groups are trained to engage peers within their community. Focus groups (6–8 participants per group) will explore facilitators and barriers to recruitment. Results/Anticipated Results: Phase 1 revealed that EMR prescreening effectively identified eligible participants, and direct outreach (phone calls, face-to-face contact during clinical visits) significantly improved recruitment success, especially among underrepresented adolescents. Flexible scheduling and consolidating study appointments enhanced participation, addressing logistical challenges like geographic distance. However, frequent changes in contact information (phone and email information) created barriers. In Phase 2, early focus group results suggest that peer recruitment is promising, with trust and community engagement being key factors. Adolescents recruited by peers were more likely to participate, though logistical hurdles such as transportation and family concerns remain. Discussion/Significance of Impact: Our study demonstrates the value of personalized outreach and prescreening in improving recruitment among adolescents. These strategies can engage communities that include Black, Indigenous, and People of Colored. These findings underscore the need for flexible recruitment strategies to ensure their participation in T2D adolescent research.
Objectives/Goals: Youth-onset diabetes and its risk factors are increasing in ethnic and racial minority communities. Our mixed-methods study aimed to explore the associations between participation in a community youth sports program and key diabetes risk factors in youth, including mental health, physical activity, nutrition, and weight status. Methods/Study Population: We used a single cohort, mixed-methods design focused on the Community Leadership Revolution (CLR) Academy, a local youth sports program. Participants, ethnic and racial minority youth ages 5–14, were recruited to assess their mental health, physical activity, and nutrition using validated and reliable questionnaires. Weight status was measured via bioelectrical impedance. Group interviews with youth and individual interviews with staff provided context for the quantitative results. A thematic analysis of the qualitative data will further explore how CLR Academy may impact diabetes risk factors. Results/Anticipated Results: We recruited 24 CLR participants (16 boys/8 girls) and 4 CLR staff (3 males/1 female). Sixteen youth identified as African-American, while the rest identified as multiracial. Correlations revealed that higher attendance at CLR Academy was negatively associated with mental health scores, specifically total, externalizing, and hyperactive scores (all p < 0.01). Higher CLR attendance was negatively associated with physical activity during spare time (p < 0.05), waist circumference (p< 0.05), and waist-to-height ratio (p < 0.01). Being a girl was associated with lower diet quality and physical activity (both p < 0.05). Qualitative data highlighted life skills and supportive relationships in CLR as key factors in improving health outcomes. Thematic analysis is ongoing to clarify these relationships. Discussion/Significance of Impact: This study highlights how participation in programs like CLR Academy may improve ethnic and racial minority youth diabetes risk factors. Staff and participant insights on mechanisms driving these health improvements may offer strategies that can be applied to similar programs focused on reducing marginalized youth’s diabetes risk.
Objectives/Goals: This study explores strategies to engage minority and vulnerable populations, including individuals with disabilities, in genomics research. It addresses the ethical, legal, and social implications (ELSI) of human research, with emphasis on data management and culturally sensitive return of actionable results. Methods/Study Population: This study will utilize a mixed-methods approach, combining quantitative surveys with qualitative interviews and focus groups to gather data from minority populations and individuals with disabilities in genomics research. Key stakeholders, including community leaders and healthcare providers, will be engaged to ensure the study’s design reflects community needs and values. Data management practices will be evaluated to align with ethical standards and community expectations. Additionally, the study will examine how actionable results can be effectively communicated to participants, considering cultural and individual differences. Results/Anticipated Results: Preliminary findings suggest that a one-size-fits-all approach to community engagement in genomic research is ineffective. This research emphasizes the importance of engaging diverse populations from the very beginning of the study to ensure that their voices are heard, and their concerns are adequately addressed. Preliminary data reveal significant variations in how communities perceive genetic research, highlighting the need for culturally tailored communication strategies. The proposed study also identifies key barriers to participation, such as mistrust of the research process and concerns about data privacy, which must be addressed to enhance community engagement. Discussion/Significance of Impact: Successful community engagement in genomic research requires understanding the cultural and social dynamics of the populations involved. Researchers must adopt flexible, community-centered approaches that address the unique needs of minority and vulnerable groups, improving inclusivity and leading to more equitable health outcomes.
Objectives/Goals: This study looks to better understand and call attention to the inequalities found within medical treatment options for individuals suffering from preeclampsia during pregnancy in the USA. The goal is to map the terrain of clinical trials and evaluating existing medicare/medicaid covered services on a both national and state levels. Methods/Study Population: The study population for this research was limited to: pregnant women, ages 18–45, both pregnant and postpartum suffering from preeclampsia. We began looking at clinical trials targeting preeclampsia treatment conducted within the United States between 2019 and 2024. Using our study population parameters, we searched clinicaltrials.gov. These trials’ inclusionary and exclusionary factors were noted, along with participant race. The drug intervention medication used during these clinical trials was compared to those prescribed by doctors via the current national standard of care. We then looked at Medicaid coverage provided to expecting mothers on a state-to-state basis and nationally regulated level. These factors included coverage on ultrasounds, low-dose aspirin, blood pressure monitors, and more. Results/Anticipated Results: Preliminary findings demonstrate the need for more federally regulated policies and programs set in place to help combat the lack of resources faced by expecting mothers across the nation. This research will expose factors contributing to a lack of successful and completed clinical trials and lack of drug intervention innovations taking place to combat the rise in maternal deaths. This study will also focus on the importance of more education and awareness for communities such as African American mothers and those facing multiple gestational pregnancies who are at much higher risk of complications during their pregnancies. We also anticipate a large correlation between a lack of proper childbirth education and mothers who experience complications during birth. Discussion/Significance of Impact: Within the past two decades, rates of preeclampsia have grown 25% within the USA. It affects 5–8% of all pregnancies, and with maternal death rates rising, it is crucial to highlight the alarming lack of government regulation. It is imperative to provide awareness to mothers from disadvantaged backgrounds to treat this preventable condition.
Objectives/Goals: To present an asset-based approach to advance minoritized patients’ participation in clinical research by elevating experienced Black research participants’ motivations and decision-making processes, favorable sociocultural research contexts, and impactful research questions to reduce chronic disease burden and improve quality of life. Methods/Study Population: Data will be extracted from a pilot study to develop an asset-based approach to clinical research with young Black adults living with chronic pain. Participants will be Black patients at an academic medical institution on the West Coast, ages 21 to 44, currently or formerly have chronic pain, and current or previous electronic health record-captured enrollment in a clinical research study. Approximately 25 Black patients will participate in semi-structured focus groups with topics including: motivations for research participation, access to research, preferred research activities, perceived research benefits, favorable structural and cultural contexts, considerations of past ethical and trust violations, and alignment of research questions and patient needs. Data will be collected Fall ‘24 and analyzed in Winter ‘25. Results/Anticipated Results: We will examine experienced Black clinical research participants’ decision-making processes for participating in research, including access to studies, perceived value of research, community support, and alignment of study goals with their personal interests and needs. Results will illuminate the sociocultural, structural, and historical contexts under which Black patients have successfully participated in clinical research, and types of studies they have participated in, and recruitment procedures that have been effective. Also, we will examine the conditions for successful study completion. Investigators will also learn about the types of clinical research questions that minoritized patients believe will have an immediate and long term impact on their lived experienced with chronic illness. Discussion/Significance of Impact: The results will challenge deficit models of minority research participation that focus solely on barriers to participation, previous ethical harms, and violations of trust/trustworthiness by elevating the motivations, favorable contexts, and empirical priorities of experienced Black clinical research participants.
Objectives/Goals: Update a 2020 systematic review evaluating comprehensiveness of curricula on community-engaged research (CEnR) principles. Our protocol assesses CEnR training at academic medical centers on inclusion of topics critical in building community-researcher trust, such as self-evaluation of personal traits and understanding power dynamics. Methods/Study Population: Researchers’ well-intentioned interest in CEnR may contribute to mistrust if executed without adequate training in three key domains: 1) community dynamics (e.g., power imbalances, local context), 2) self-evaluation of personal traits (e.g., implicit bias), and 3) dissemination and advocacy. Piasecki et al.’s systematic review found that CEnR trainings at institutions funded by the Clinical and Translational Science Award program inadequately covered these domains. Our protocol builds upon theirs by 1) linking domains to community-researcher trust, as Hallmark et al. recommend; 2) comparing faculty versus community partner CEnR trainings (from CTSA-funded institutions); and 3) including National Cancer Institute-designated cancer centers’ trainings. Results/Anticipated Results: Data collection is underway with analyses to be completed by March 2024. We will determine if programs fortified trainings in Piasecki et al.’s 8 domains (>20% with documented learning objectives, didactic presentations, and experiential learning activities). We will identify exemplar programs to provide recommendations for optimizing curricula. This updated review will gauge progress in the field of CEnR training and guide development of more robust modules, particularly seeking thoughtful, intentional engagement with the target community to cultivate and sustain trust. Strong CEnR training programs are critical for forming inclusive, long-lasting partnerships that benefit researchers and communities alike. Discussion/Significance of Impact: Monitoring and evaluating progress of CEnR training programs ensures the next generation of researchers are prepared to sustain partnerships that benefit individual and community health. Institutional investment in improving CEnR practices is essential to correct historical and prevent future injustices.
Objectives/Goals: To explore the caregivers’ lived experiences related to facilitators of and barriers to effective primary care or neurology follow-up for children discharged from the pediatric emergency department (PED) with headaches. Methods/Study Population: We used the descriptive phenomenology qualitative study design to ascertain caregivers’ lived experiences with making follow-up appointments after their child’s PED visit. We conducted semi-structured interviews with caregivers of children with headaches from 4 large urban PEDs over HIPAA-compliant Zoom conferencing platform. A facilitator/co-facilitator team (JH and SL) guided all interviews, and the audio of which was transcribed using the TRINT software. Conventional content analysis was performed by two coders (JH and AS) to generate new themes, and coding disputes were resolved by team members using Atlas TI (version 24). Results/Anticipated Results: We interviewed a total of 11 caregivers (9 mothers, 1 grandmother, and 1 father). Among interviewees, 45% identified as White non-Hispanic, 45% Hispanic, 9% as African-American, and 37% were publicly insured. Participants described similar experiences in obtaining follow-up care that included long waits to obtain neurology appointments. Participants also described opportunities to overcome wait times that included offering alternative healthcare provider types as well as telehealth options. Last, participants described desired action while awaiting neurology appointments such as obtaining testing and setting treatment plans. Discussion/Significance of Impact: Caregivers perceived time to appointment as too long and identified practical solutions to ease frustrations while waiting. Future research should explore sharing caregiver experiences with primary care providers, PED physicians, and neurologists while developing plans to implement caregiver-informed interventions.
Objectives/Goals: Knowledge about predictive factors for immune-related endocrinopathies can help identify appropriate populations for specific screening approaches, provide recommendations for ICI therapy selection, guide clinical monitoring strategies to improve patient outcomes, and guide research efforts to provide equitable healthcare for all patients. Methods/Study Population: This is an analysis of the demographic and clinical data available of patients from DiRECT Cohort, a longitudinal study that prospectively follows adult cancer patients who self-identify as Black or White and undergo anti-PD-(L)1 ICI therapy. Endocrinopathies were graded using the CTCAE criteria. Kaplan–Meier method was used to calculate the incidence within the first year of treatment. Bivariate analysis (Chi-square and log-rank test) examined the associations between patient demographics, clinical characteristics, and endocrinopathies. Results/Anticipated Results: Among 955 patients, 13.20% developed endocrinopathies of any grade, most commonly hyper-/hypothyroidism and adrenal insufficiency, and 5.97% were at grade ≥2. Younger age (7.59% in age 30 vs. 4.72% in BMI ≤30, p = 0.022) showed significant associations. No significant difference was found in the incidence of grade ≥2 endocrinopathies by race (13.3 % in White and 10.79% in Black patients, p = 0.732). No association was found with cancer stage or comorbidities. Discussion/Significance of Impact: ICIs can lead to (irAEs). Endocrinopathies are a common type of irAEs, presenting a unique challenge. However, the current literature lacks real-time data and a comprehensive comparative analysis of variables like race. Identifying and understanding these variables ensures equatable access to safe and effective healthcare for all patients.
Objectives/Goals: With qualitative interviews we aim to 1-Describe barriers and facilitators for post-transplant lymphoproliferative disease (PTLD) survivors’ access to late effects (LE) care. 2-Investigate clinicians’ perceptions of current and ideal PTLD LE care. Our long-term goal is to develop and pilot implementation strategies to standardize PTLD LE care. Methods/Study Population: Study population: We will recruit 20–25 PTLD survivors or their caregivers and 10–15 health care workers (HCW) from oncology, LE, and solid organ transplant (SOT) teams at St. Louis Children’s Hospital (SLCH). PTLD is a lymphoma-like cancer that occurs in solid organ transplant (SOT) recipients. PTLD survivors experience LE from cancer, yet many do not receive LE care. Research strategy: We will conduct qualitative semi-structured interviews based on the Consolidated Framework for Implementation Research (CFIR). A preliminary codebook will be based on CFIR and refined through transcript review. Team-based coding includes double coding and checking for intercoder reliability. We will generate coding reports to understand themes and identify barriers and facilitators of LE care. Results/Anticipated Results: We hypothesize survivors, caregivers, and HCWs will identify actionable factors to inform future studies to optimize LE care. We will examine the CFIR inner setting (resources, communication, and structural characteristics), outer setting (local attitudes and external pressures), innovation domain (adaptability, evidence base, and relative advantage), individuals domain (need, opportunity, and motivation), and implementation process domain. Our contribution will be novel. 1-This is the first assessment of barriers and facilitators for LE care in pediatric PTLD survivors. 2-We will consider input from HCWs across various disciplines delivering care to PTLD survivors. 3-We anticipate identifying unique contextual factors in PTLD survivors that will influence implementation of evidence-based LE care. Discussion/Significance of Impact: Pediatric cancer survivors experience LE. Coordinated care mitigates LE. PTLD survivors experience a high burden of LE, but less than 10% of PTLD survivors at SLCH follow in LE clinic. No studies have evaluated ideal delivery of LE care for PTLD survivors. Our findings will inform an implementation trial to improve delivery of LE care for PTLD survivors.
Objectives/Goals: Present a framework for hosting Community Grand Rounds, where community and academic partners showcase completed community-engaged research (CEnR) projects. This highlights innovative dissemination methods, engages diverse audiences, elicits community responses, and advances the translational science of CEnR. Methods/Study Population: Our approach involves planning and outreach to collaborate with promotion of academic and community engaged grantees to develop community dissemination events that translate the science of CE into accessible, relatable, culturally relevant formats for diverse audiences. These events incorporate interactive presentations that encourage active participation and feedback from attendees. Following each event, an evaluation is completed to assess community impact. Key strategies for hosting, facilitating, and utilizing diverse marketing to ensure that events are tailored to culturally diverse community groups, including regional implementation when practical. This collaborative approach meets a critical need and strengthens the bond between researchers and the communities they aim to serve. Results/Anticipated Results: These events create a feedback loop between the community and academic researchers. It was not just about telling people what was found. We created opportunities for community members and academics to build trust, give us feedback, ask questions, and discuss how findings could be practically applied. By presenting the findings in an accessible way within the community, community members are more informed and empowered to make decisions or advocate for changes in their own lives based on the research. Academics also benefited from community feedback, which provided new insights to help refine future research questions and methods. The goal is for shared conversation and understanding between community members and academics to inspire real-world applications and policy change directly informed by the research. Discussion/Significance of Impact: Community Grand Rounds are one dissemination strategy to leverage community–academic collaboration to present tailored research, fostering engagement, understanding, and action between researchers and community members. This approach effectively enhances the translational science of CEnR by involving and benefiting the community.
Objectives/Goals: Our objective is to evaluate how access to oral health care and tobacco use in patients with serious mental illness (SMI) impact their oral health outcomes identifying barriers and service utilization disparities affecting the prevalence and severity of oral diseases. Methods/Study Population: A secondary retrospective data analysis study will use records from the electronic database (All of Us). The study population includes individuals over 21 years old, diagnosed with SMI. Data will be collected focusing on their oral health status, access to oral health care (frequency of visits, availability of services, etc.), tobacco use, and social determinants of health. The study will evaluate the impact of access to oral health care on the prevalence of oral health outcomes (e.g., periodontal diseases and oral cancer), analyzing socioeconomic factors, mental health status, and tobacco use as independent variables. A quantitative, descriptive-correlational analysis will be performed to explore the study variables. Results/Anticipated Results: We anticipate that limited access to oral health care, influenced by socioeconomic factors, the presence of SMI, and tobacco use, will correlate with worse oral health outcomes in Hispanics. Disparities in access, such as financial limitations, transportation issues, and stigma, are expected to significantly hinder service utilization and increase the prevalence of oral diseases in patients with SMI who smoke. Discussion/Significance of Impact: This research highlights the need to address disparities in oral health access for Hispanic marginalized populations, particularly those with severe mental illness and tobacco use. It will contribute to reducing health inequalities and improving oral health outcomes through culturally adapted interventions that address these barriers.
Objectives/Goals: Audience will understand the engage for equity CBPR conceptual framework used to develop our partnership survey. Audience will better understand our survey design and administration process. Audience will understand our initial experiences, community advisory board member responses, and how the process influenced our engagement efforts. Methods/Study Population: The objective of this assessment is to understand how our community partners perceive our engagement efforts. The questionnaire is based on the 12 constructs of the CBPR engage for equity model. We plan on annually assessing impact and refining engagement approaches in response to community partners’ perspectives. Community Advisory Board members and other partners will complete an online survey and participate in a subsequent discussion and planning session about the responses. We anticipate evaluating approximately 400 community partners who collaborate with the Wright Regional Clinical and Translational Science Awards between 2023 and 2030 with a RedCAP survey and discussion. The instrument uses validated questions from a range of engagement instruments to assess context, partnership structure, processes, outputs, and outcomes. Results/Anticipated Results: We hypothesize that both the survey and subsequent discussion about how respondents reacted to answering the questions will improve our ability to track and adapt our community engagement efforts. Discussion/Significance of Impact: Our annual survey is not project specific and using it longitudinally will inform our engagement process to research that aligns with community needs. We anticipate this will help us to guide our research agenda to align with community needs and define impact of our university–community partnership.
Objectives/Goals: This project provides a framework for collaborative design of a health technology intervention. We aim to provide guidance for those seeking to incorporate community-informed insights into their intervention development, particularly within the context of a large randomized controlled trial. Methods/Study Population: As part of the patient engagement arm of the Championing Hypertension Remote Monitoring for Equity and Dissemination study, we designed patient-facing intervention components for a home hypertension monitoring system. In the design process, we convened patient consultants via regular meetings, one-on-one interviews, and focus groups, and then subsequently analyzed meeting recordings, audio transcripts, and stakeholder notes. All design sessions were offered in either English or Spanish, and sixteen participants were involved. An inductive thematic analysis is being performed utilizing two coders, and Dedoose has been used to organize and refine the data. Results/Anticipated Results: The randomized trial will begin late 2024, with overall design findings incorporated into the intervention. A more detailed qualitative analysis will map these design findings to overarching theory from the Technology Acceptance Model. These qualitative themes will provide a model of patient involvement in study design in a large randomized controlled trial, potentially guiding future improvements in technology-based healthcare delivery interventions. Discussion/Significance of Impact: As technology becomes integral to healthcare, involving patients in intervention design and rollout can improve efficacy and utilization. By offering a framework for patient involvement in intervention design, we aim to create a replicable model to enhance the translation of research into practice.