Potential Research Participants Research Articles

Exploring Forms and Practices of Menstruation in the Changing Social System: A Study of Suryabinayak-05, Katunje, Bhaktapur

Menstruation forms and practices with restriction have a long history not only in a single culture and region but in various religions and cultures may vary according to the level of their cultural norms, values and superstitions. The aim of the study is to explore the forms of practices of menstruation in the changing Nepali society. The qualitative data were collected from the Suryabinayak-05, Katunje, Bhaktapur district. All total 10 potential research participants were selected for in-depth interview along with non-participant observation in the field. The study indicates that the women from Brahmin and Chhetri community affiliated to Hindu religion are practicing almost all forms of discrimination due to menstruation. Stay in a separate room, eating in a separate room, bathing in separate bathroom, be away from social activities and not participate in religious activities. This discrimination should be addressed through awareness programs in the community.

99 Using LGBTQ+ Community Expertise to Co-Develop Inclusive Sexual Orientation and Gender Identity (SOGI) Screening for Research Studies

OBJECTIVES/GOALS: To promote diverse research engagement and address health disparities by creating an inclusive tool to collect sexual orientation and gender identity (SOGI) data from potential participants #_msoanchor_1 METHODS/STUDY POPULATION: The Penn State Community Health Equity & Engagement in Research (CHEER) team, part of our Clinical and Translational Science Institute (CTSI), developed inclusive screening guidance to collect SOGI data from potential research participants to fill an identified gap in the literature. Guidance was developed through an iterative feedback process, leveraging expertise from local, regional, and national organizations, healthcare systems, and leaders throughout Clinical & Translational Science Award hubs. By eliciting expert feedback, CHEER co-developed a comprehensive SOGI data collection form, filling an important gap of inclusivity in the consenting process. Training of this new tool was delivered to CHEER’s far-reaching listserv researchers (internal and external) and community partners. RESULTS/ANTICIPATED RESULTS: Feedback collected from our LGBTQ+ expert partners resulted in a total of five inclusive SOGI screening questions; two ‘Gender Identity’ questions, one ‘Sexual Orientation’ question, and two ‘Sex’ questions, with “prefer not to answer” and “another option not listed” provided. The goal of this effort is to equip research teams with a tool that integrates SOGI characteristics that may be particularly important to determine study eligibility respective to a person’s identity or orientation. Additionally, collecting SOGI data in an inclusive way may increase trust worthiness in research from potential research participants, particularly among the LGBTQ+ community, who have been underrepresented yet experience several inequities and disparities across multiple health outcomes. DISCUSSION/SIGNIFICANCE: CHEER’s goal is to reduce health disparities in underrepresented populations, including the LGBTQ+ community, by promoting inclusivity and engagement in research. Developing a community-driven screening that addresses the unique needs of the LGBTQ+ community successfully bridges a gap in equity across all research participants.

Consent as a compositional act – a framework that provides clarity for the retention and use of data

BackgroundInformed consent is one of the key principles of conducting research involving humans. When research participants give consent, they perform an act in which they utter, write or otherwise provide an authorisation to somebody to do something. This paper proposes a new understanding of the informed consent as a compositional act. This conceptualisation departs from a modular conceptualisation of informed consent procedures.MethodsThis paper is a conceptual analysis that explores what consent is and what it does or does not do. It presents a framework that explores the basic elements of consent and breaks it down into its component parts. It analyses the consent act by first identifying its basic elements, namely: a) data subjects or legal representative that provides the authorisation of consent; b) a specific thing that is being consented to; and c) specific agent(s) to whom the consent is given.ResultsThis paper presents a framework that explores the basic elements of consent and breaks it down into its component parts. It goes beyond only providing choices to potential research participants; it explains the rationale of those choices or consenting acts that are taking place when speaking or writing an authorisation to do something to somebody.ConclusionsWe argue that by clearly differentiating the goals, the procedures of implementation, and what is being done or undone when one consent, one can better face the challenges of contemporary data-intensive biomedical research, particularly regarding the retention and use of data. Conceptualising consent as a compositional act enhances more efficient communication and accountability and, therefore, could enable more trustworthy acts of consent in biomedical science.

Reshaping consent so we might improve participant choice (III) – How is the research participant’s understanding currently checked and how might we improve this process?

Valid consent requires the potential research participant understands the information provided. We examined current practice in 50 proposed Clinical Trials of Investigational Medicinal Products to determine how this understanding is checked. The majority of the proposals ( n = 44) indicated confirmation of understanding would take place during an interactive conversation between the researcher and potential participant, containing questions to assess and establish understanding. Yet up until now, research design and review have not focussed upon this, concentrating more on written material. We propose ways this interactive conversation can be documented, and the process of checking understanding improved.

The Australia New Zealand Congenital Colorectal Registry (ANZCCoRe): Driving innovation through collaboration

Colorectal paediatric surgeons, rare and complex colorectal patients, and data on this patient group are dispersed far and wide in Australia and New Zealand (ANZ). Online databases facilitate sharing and collating of data, and may help to connect physically separated clinicians and researchers. The Australia New Zealand Congenital Colorectal Registry (ANZCCoRe) is an international, multicentre patient registry that aims to improve clinical outcomes, standardise care, and enhance collaborations between centres with expertise in paediatric colorectal conditions across ANZ.The ANZCCoRe will collect retrospective and prospective clinical data of patients with anorectal malformations (ARM) and/or Hirschsprung disease (HD) through an electronic data capturing platform. Collected data will include demographic characteristics, diagnostics, care pathways, associated anomalies, surgical details and complications, and functional outcomes. The datapoints will be categorised into required core data elements and requested additional data elements. Data will be deidentified and stored on secured servers, meeting ethical and legal requirements. Data quality procedures will exist and feasible application of the findability, accessibility, interoperability, and reusability (FAIR) principles will promote data sharing and reuse with other registries.Besides gaining a better understanding of the patient and disease characteristics, monitoring care, and evaluating health-related outcomes, the ANZCCoRe provides a source for potential research participants. Lastly, the ANZCCoRe enhances advocacy for patients and families affected by colorectal conditions.The ANZCCoRe is the first multicentre congenital colorectal patient registry in this geographical region. Its strengths lie in facilitating research, standardisation of care, patient advocacy, and collaboration with paediatric surgical centres across ANZ and beyond.Level of Evidence: IV

Development of a New Tool for Writing Research Key Information in Plain Language.

The complexity of research informed consent forms makes it hard for potential study participants to make informed consent decisions. In response, new rules for human research protection require informed consent forms to begin with a key information section that potential study participants can read and understand. This research study builds on exiting guidance on how to write research key information using plain language. The aim of this study was to develop a valid and reliable tool to evaluate and improve the readability, understandability, and actionability of the key information section on research informed consent forms. We developed an initial list of measures to include on the tool through literature review; established face and content validity of measures with expert input; conducted four rounds of reliability testing with four groups of reviewers; and established construct validity with potential research participants. We identified 87 candidate measures via literature review. After expert review, we included 23 items on the initial tool. Twenty-four raters conducted 4 rounds of reliability testing on 10 informed consent forms. After each round, we revised or eliminated items to improve agreement. In the final round of testing, 18 items demonstrated substantial inter-rater agreement per Fleiss' Kappa (average = .73) and Gwet's AC1 (average = .77). Intra-rater agreement was substantial per Cohen's Kappa (average = .74) and almost perfect per Gwet's AC1 (average = 0.84). Focus group feedback (N = 16) provided evidence suggesting key information was easy to read when rated as such by the Readability, Understandability and Actionability of Key Information (RUAKI) Indicator. The RUAKI Indicator is an 18-item tool with evidence of validity and reliability investigators can use to write the key information section on their informed consent forms that potential study participants can read, understand, and act on to make informed decisions. [HLRP: Health Literacy Research and Practice. 2024;8(1):e29-e37.].

Registry and survey of circadian rhythm sleep-wake disorder patients

ObjectiveCircadian Sleep Disorders Network has created a registry of circadian rhythm sleep-wake disorder (CRSWD) patients, and a survey of their experiences. The purpose of the registry is to provide volunteers willing to participate in research; the purpose of the survey is to fill some of the knowledge gaps on these disorders, including information on subjective patient experience and the efficacy and durability of treatments.Researchers are invited to contact Circadian Sleep Disorders Network for permission to use the registry to find potential research participants, and to further analyze the survey data. PatientsOver 1627 patients have participated; 1298 have completed the entire survey. Here we present results based on the 479 clinically diagnosed CRSWD patients. MethodsThe survey covers a variety of topics relating to CRSWDs, including diagnosis, comorbidities, treatments, and work/educational accommodations. ConclusionsResults of this survey diverged from much of the literature. More than half the participants reported tiredness even when sleeping on their preferred schedule. While depression may cause sleep problems, our data suggests that sleep/circadian problems often precede depression.There were more people suffering from sighted non-24-hour sleep-wake rhythm disorder than some of the literature would lead us to expect.Current treatments did not appear to be helpful to a large percentage of our participants. Most of them did not find light therapy helpful and nearly all participants who tried phase-delay chronotherapy reported at best only short-term improvement. A sizable proportion of people who tried phase-delay chronotherapy subsequently developed non-24-hour sleep-wake rhythm disorder.

Testing and Practical Implementation of a User-Friendly Personalized and Long-Term Electronic Informed Consent Prototype in Clinical Research: Mixed Methods Study.

Over the years, there has been increasing interest in electronic informed consent (eIC) in clinical research. The user-friendliness of an eIC application and its acceptance by stakeholders plays a central role in achieving successful implementation. This study aims to identify insights for the design and implementation of a user-friendly, personalized, and long-term eIC application based on a usability study with (potential) research participants and semistructured interviews with stakeholders on the practical integration of such an application into their daily practice. An eIC prototype was evaluated and refined through usability testing among Belgian citizens and iterative redesign. On the basis of a digital literacy questionnaire, a heterogeneous sample of participants was established. Participants needed to complete a series of usability tasks related to personalization and long-term interaction with the research team while using the "think aloud" technique. In addition, usability tests involved completing the System Usability Scale questionnaire and taking part in a semistructured feedback interview. Furthermore, semistructured interviews were conducted with ethics committee members, health care professionals, and pharmaceutical industry representatives active in Belgium and involved in clinical research. Thematic analysis was undertaken using the NVivo software (Lumivero). In total, 3 iterations of usability tests were conducted with 10 participants each. Each cycle involved some participants who reported having low digital skills. The System Usability Scale scores related to the tasks on personalization and long-term interaction increased after each iteration and reached 69.5 (SD 8.35) and 71.3 (SD 16.1) out of 100, respectively, which represents above-average usability. Semistructured interviews conducted with health care professionals (n=4), ethics committee members (n=8), and pharmaceutical industry representatives (n=5) identified the need for an eIC system that can be easily set up. For example, a library could be established enabling stakeholders to easily provide background information about a clinical study, presented in the second layer of the interface. In contrast, some functionalities, such as informing participants about new studies through an eIC system, were not considered useful by stakeholders. This study provides insights for the implementation of a user-friendly personalized and long-term eIC application. The study findings showed that usability testing is key to assessing and increasing the user-friendliness of an eIC application. Although this eIC system has the potential to be usable by a wide audience, participants with low digital literacy may not be able to use it successfully, highlighting the need for additional support for participants or other alternatives to an eIC system. In addition, key lessons emerging from the interviews included ensuring that the application is easy to implement in practice and is interoperable with other established systems.

Validation of a mobile fNIRS device for measuring working memory load in the prefrontal cortex

Functional near-infrared spectroscopy (fNIRS) is a neuroimaging technique that measures cortical blood flow to infer neural activation. Traditionally limited to laboratory settings due to high costs and complex operation, recent advancements have introduced mobile fNIRS devices, significantly broadening the scope of potential research participants. This study validates the use of the Mendi, a two-channel mobile fNIRS system, for measuring prefrontal oxyhemoglobin concentration changes during an n-back task. We manipulated task difficulty through different n-back levels (one-back versus three-back), revealing increased oxyhemoglobin concentrations in the prefrontal cortex during the more demanding three-back task compared to the one-back task. This finding demonstrates the Mendi's ability to distinguish between low and high cognitive task loads. Behavioural data, showing a decrease in accuracy under high load conditions, further corroborates these neuroimaging findings. Our study validates the Mendi mobile fNIRS system as an effective tool for assessing working memory load and underscores its potential in enhancing neuroscientific research accessibility. The user-friendly and cost-effective nature of mobile fNIRS systems like the Mendi opens up neuroscientific research to a diverse set of participants, enabling the investigation of neural processes in real-world environments across a variety of demographic groups.

Spillover Effects of COVID-19 News Coverage on Willingness to Participate in Medical Research in a Diverse Sample of US Older Adults

COVID-19 has dominated news coverage since the beginning of the pandemic. The extent to which exposure to such news affected perceptions of medical research and other health issues is not clear, especially among older adults who are more susceptible to infection and experience more COVID-19-related morbidity and mortality. This study uses a two-wave national panel of U.S. adults ages 50 years and older ( n = 1,240) to examine the mechanism through which exposure to source-specific news outlets (e.g., national network broadcasts, CNN, Fox News, MSNBC) affected willingness to participate in medical research for COVID-19 and Alzheimer’s disease (AD), both of which afflicts millions of older adults. We hypothesized that spillover from COVID-19 information exposure influenced potential research participation in AD research through attitudes toward science and COVID-19 misperceptions. Path analysis results provide empirical support for spillover effects which vary by news outlet.

Should Chatbots Be Used to Obtain Informed Consent for Research?

Chatbots have become increasingly common in diverse settings as a substitute for human conversation. They are being developed and tested for obtaining informed consent for research. An initial study indicated that chatbots saved time and were successful in knowledge transfer, but the informed consent process serves other purposes, such as building trust and respecting the autonomy and dignity of potential research participants. Additional research and possible regulation are necessary before chatbots should be routinely used in health research.

Diverse Research Teams and Underrepresented Groups in Clinical Studies

Several ophthalmic diseases disproportionately affect racial and ethnic minority patients, yet most clinical trials struggle to enroll cohorts that are demographically representative of disease burden; some barriers to recruitment include time and transportation, language and cultural differences, and fear and mistrust of research due to historical abuses. Incorporating diversity within the research team has been proposed as a method to increase trust and improve engagement among potential study participants. To examine how demographic factors of potential research participants and personnel may be associated with patient consent rates to participate in prospective ophthalmic clinical studies. This retrospective cohort study included patients from an urban, academic hospital who were approached for consent to participate in prospective ophthalmic clinical studies conducted between January 2015 and December 2021. Multivariable logistic regression assessing associations between patient and research personnel demographics and rates of affirmative consent to participate was used. In total, 1380 patients (mean [SD] age, 58.6 [14.9] years; 50.3% male) who were approached for consent to participate in 10 prospective ophthalmic clinical studies were included. Of prospective patients, 566 (43.5%) were Black; 327 (25.1%), Hispanic or Latino; 373 (28.6%), White; 36 (2.8%), other race and ethnicity; and 78 (5.8%) declined to answer. Black patients (odds ratio [OR], 0.32; 95% CI, 0.24-0.44; P < .001) and Hispanic or Latino patients (OR, 0.31; 95% CI, 0.20-0.47; P < .001) were less likely to consent compared with White patients. Patients with lower socioeconomic status were less likely to consent than patients with higher socioeconomic status (OR, 0.43; 95% CI, 0.33-0.53; P < .001). Concordance between patient and research staff race and ethnicity was associated with increased odds of affirmative consent (OR, 2.72; 95% CI, 1.99-3.73; P < .001). In this cohort study, patients from underrepresented racial and ethnic groups and those with lower socioeconomic status were less likely to participate in ophthalmic clinical studies. Concordance of race and ethnicity between patients and research staff was associated with improved participant enrollment. These findings underscore the importance of increasing diversity in clinical research teams to improve racial and ethnic representation in clinical studies.

Effect of Exhibition Facilities, Professional Competence, and Green Procurement on Green Meeting, Incentive Travel, Convention, and Exhibition Industry Performance Measurement: A Case Study of the Exhibition Industry of Taiwan

In this study, a performance indicator scale was constructed to measure the performance of the exhibition industry, and a survey was conducted. The respondents were exhibition industry professionals, exhibitors, and their employees. A questionnaire containing the scale items was distributed to potential research participants, and 323 valid responses were obtained. Through a literature review, the relevant theories were compiled. Structural equation modeling was employed for analyzing the collected data. The exhibition hall facilities, marketing skills of organizers, environmental resources near the exhibition hall, knowledge and skills of exhibition industry professionals, and implementation of green procurement were all discovered to have significant positive effects on exhibition performance. The indicator scale was found to be appropriate for measuring exhibition industry performance. Therefore, it can be used as an indicator for measuring exhibition performance and for exploring the professional functions required from exhibition personnel. The findings also indicate that the implementation of green procurement can strengthen the value and significance of green exhibitions. On the basis of the results, suggestions are made regarding how the public sector can integrate stakeholders to further develop the exhibition industry. This study hopes to prompt the government to prioritize the active improvement of this industry.

Return to work rate of individuals after cardiac rehabilitation and the demographic and impairment factors that influence return to work in the Western Cape, South Africa

Background: Cardiovascular disease commonly affects individuals within the working age group, often resulting in unemployment, particularly in low- to middle-income countries. The purpose of the study was to determine the return-to-work rate of individuals with cardiovascular disease after cardiac rehabilitation (CR) and the impact of impairment and socio-demographics on the individual’s ability to RTW. Methods: A cross-sectional survey, namely the Work Rehabilitation Questionnaire was used to gather the information. The IBM SPSS software (version 25) was used to manage the statistical analysis. Individuals who completed a cardiac rehabilitation program between the ages of 18 and 64 years made up a sample of 63 potential research participants. Results: The return-to-work (RTW) rate reported that only 30 (47.6%) of the participants successfully returned to work after CR and 33 (52.4%) of participants did not RTW. The results also indicated that the older the individual and the higher the degree of impairment experienced, the less likely RTW would occur. Conclusion: The study concluded that only 47.6 % of individuals completing cardiac rehabilitation returned to work. Being older and the degree of impairment impacts on one’s ability to return to work. Factors such as the age and level of functional impairment of the individual with cardiovascular disease must be addressed more aggressively in cardiac rehabilitation programs, particularly if the goal of the individual with cardiovascular disease is to RTW.

O-086 Co-development of Orchid mobile application for supporting fertility intentions and reproductive choices

Abstract Study question What does co-development bring to the design of a mobile application (app) for supporting fertility intentions and reproductive choices? Summary answer Co-development of the app for supporting fertility intentions and reproductive choices informed the design and content, from expressed preferences, ensuring acceptability by the end user. What is known already We sought to develop a digital tool to support people of reproductive age to understand their pregnancy preferences and fertility intentions; helping them to prepare for pregnancy, improving pregnancy outcomes, preventing unplanned pregnancies and reducing inequalities in maternal health. Orchid encourages the person to consider that they have a choice about their fertility intentions and to reflect on their personal reproductive goals and how this may fit with other life goals. We aimed to co-develop a mobile app via a person-centred approach, which draws on behaviour change theory. Study design, size, duration The app development was conducted via University College London. Co-development was conducted online over five rounds (four online surveys and one online group discussion) from November 2022 – February 2023. Round 1 – Content mapping, Round 2 – App layout, Round 3 – Online group discussion of content and layout, Round 4 – App design, and Round 5 - Functioning pilot app. Participants/materials, setting, methods Participants were invited via a database of potential research participants and were purposefully selected to ensure diversity and inclusion. The co-development group was made up of 10 women from across the UK; aged 19-44 years with a range of relationship status’ (married, divorced, cohabiting and single), ethnicities (White n = 8, Asian n = 1, Mixed n = 1) and family sizes. Main results and the role of chance We gained feedback from our co-development group through online surveys, made up of a combination of structured and open text questions. We also held an online group session which allowed us to have an in-depth discussion about the content and look of the app. As a result of the co-development feedback, we redesigned key elements of the app; altering the language used throughout, including the wording of the pregnancy prediction, adding extra information about the reproductive preference groups and including a wider range of resources. The overall look of the app also changed considerably, with feedback from the co-development group helping to make decisions regarding the colour scheme, the number of screens, the layout and presentation of information. Final user testing was also conducted by the co-development group to verify functionality of the app. We performed multiple iterations of co-development – with a survey at every development stage – and used the feedback to inform our decisions throughout the development process to ensure acceptability to the end user. Limitations, reasons for caution There was a limited number of participants involved in this, the first stage of developing a Minimum Viable Product (MVP) of the app. A larger group of even more diverse individuals will be needed for the next stage, which will likely increase the complexity of the co-development process. Wider implications of the findings We co-developed an MVP app with a sample population, representative of our end-user. Participants were involved in every stage of the development process and provided a positive evaluation of the product. People must be viewed less as consumers and more as contributing partners in their care. Trial registration number not applicable

Nurturing Curiosity Beyond Identity Labels to Find the Radical: Notes on What Encouraged Radical Youth to Participate in Transnational Qualitative Research

Researchers interested in expanding our understanding about individuals, who are silenced by majority societies or those who willingly position themselves close to condemned standpoints, need to also think about ways of approaching and encouraging potential research participants. The current paper frames that need as an act of curiosity and an ethical responsibility. With that framing in hand, the paper explains the process of overcoming difficulties related to recruiting radicalized subpopulations of youngsters (154 self-identified Muslim youth with migration backgrounds and 153 native youth who support movements labeled as far right) in a transnational qualitative research conducted in four different countries (Germany, France, Belgium, and the Netherlands) in 2020–2022. Because both groups are subject to the labels imposed on them by the majority societies (e.g., Muslim, Salafi, conservative, fascist, right wing, etc.), the researchers felt the need to be flexible in the ways they address and approach each participant. In the field, the purposeful efforts of recruitment wording for each individual appeared very useful in encouraging this by nature skeptical group of people. The current paper documents the development of this flexible strategy, which I hope will be useful to many qualitative researchers to facilitate their data collection efforts to identify and reach youth that is on the path of radicalization. We would like to encourage academics to stay curious about these two subpopulations of youth and other marginalized, singled out, and stigmatized groups, and consider interviewing as many individuals as possible in order to discover the radicals.

Assessing geographic disparities in mental health research participation

BackgroundLarge geographic health disparities are well-documented within the U.S. Although approximately 60 million Americans—or roughly 20% of the total U.S. population—live in rural areas, rural residents may be less likely to participate in health research, including mental health research, due to multiple barriers. This retrospective analysis evaluated the urbanity and rurality of inpatient research participants and potential research participants over a five-year period at the Experimental Therapeutics and Pathophysiology Branch (ETPB), NIMH-NIH (Bethesda, Maryland), which conducts experimental medicine and neurobiological research in mood disorders. MethodsParticipant and potential participant zip codes were converted to Rural Urban Commuting Area (RUCA) codes (1–3 urban, 4–10 rural). These results were compared with each other and with U.S. population data. ResultsThe analysis included 182 research participants and 1864 potential research participants; the former were admitted to an in-person research unit and the latter were screened by phone or online. ETPB research participants had an urban residence rate of 93.4% and a rural residence rate of 6.6%. Potential ETPB research participants had an urban residence rate of 90.9% and a rural residence rate of 9.1%. In comparison, the U.S. urban residence rate is 80% and the rural rate is 20%. ConclusionAt the ETPB, both research participants with mood disorders admitted to an in-person research unit and potential research participants screened online or by phone from rural areas were under-represented relative to participants from more urban areas. Further study of research recruitment barriers in rural areas of the U.S is needed.

235 Use of Community Review Boards to Evaluate the Utility of the ICF Navigator - A Browser-based Tool to Create Plain-Language Informed Consent Forms

OBJECTIVES/GOALS: To evaluate the clarity of plain-language informed consent forms (ICF) created using a browser-based tool called the ICF Navigator, we solicited feedback from two community review boards (CRB) to ensure the resulting ICF met the informational needs of all potential participants, including those with limited health literacy skills. METHODS/STUDY POPULATION: Community-engaged research highlights the importance of involving community members in the planning and execution of translational research projects. Virtual discussions were held to elicit feedback from two separate CRBs on the understandability of an ICF that was generated using an online, browser-based tool that we designed to aid researchers in the creation of plain-language ICFs. CRBs included representation of diverse communities from across the state of Arkansas, including individuals who may have limited health literacy skills, those with and without prior experience participating in clinical research projects, members living in rural and urban settings, and those whose race or ethnicity have been traditionally underrepresented among clinical research participants. RESULTS/ANTICIPATED RESULTS: CRB feedback was used to inform actionable improvements to the tool, such as removing content redundancies and embedding tips to guide researchers on how best to optimize the clarity and understandability of resulting ICFs. Program refinements in response to the feedback have been implemented and will be evaluated in another round of CRB discussions in early 2023. Feedback from this follow-up CRB session will also be presented in addition to a discussion of how the feedback was used to improve the online tool, which will ultimately be available for free use by other institutions. DISCUSSION/SIGNIFICANCE: The use of community feedback to optimize the functionality of the ICF Navigator demonstrates the value of CRBs for ensuring that ICFs are culturally salient and readily understandable by all potential research participants, particularly those who may have limited health literacy skills, thereby promoting more equitable opportunities for all.

409 Raising research awareness through StudyFinder

OBJECTIVES/GOALS: To increase public awareness and access to research opportunities at the University of Minnesota (UMN) utilizing StudyFinder, a public-facing website that features actively enrolling UMN research studies and directly connects website visitors with study teams. METHODS/STUDY POPULATION: Promote the University of Minnesota CTSI’s StudyFinder website to the public via social media ad campaigns and community outreach. Upon completion of the latest StudyFinder enhancement project in 2021, CTSI focused 2022 efforts on marketing and promotion of the site. CTSI created three StudyFinder social media ad campaigns in January, June, and October. CTSI also planned outreach events during the week of Clinical Trials Day, the Minnesota State Fair (1.8M attendees over 12 days), and the UMN’s Urban Research and Outreach-Engagement Center Community Day. RESULTS/ANTICIPATED RESULTS: Website traffic data from Google Analytics indicated a 72.76% increase in StudyFinder sessions from 2021 (Jan 1, 2021 to Nov 1, 2021) to 2022 (Jan 1, 2022 to Nov 1, 2022), with 16,262 sessions to 28,094 sessions, respectively. Direct emails from potential participants to study teams increased 89% in that same timeframe, from 3,082 emails to 5,819 emails. Targeted marketing campaigns and attending community events can improve the visibility of an institution’s research and connections of potential research participants to research teams. DISCUSSION/SIGNIFICANCE: Recruitment remains a main challenge in clinical and translational research. StudyFinder is an important patient-facing tool to connect individuals to specific studies. Future directions include expanding marketing efforts, events, and public feedback.

Qualitative analysis of stakeholder perspectives on engaging Latinx patients in kidney-related research

BackgroundLatinx individuals are disproportionally burdened by kidney diseases compared to non-Latinx White individuals and are underrepresented in kidney-related research. We aimed to describe stakeholder perspectives on Latinx patient engagement in kidney-related research.MethodsWe conducted a thematic analysis of two online moderated discussions and an interactive online survey with open-text responses involving participants (i.e. stakeholders), with personal and/or professional experiences with Latinx patients with kidney diseases and their families/caregivers.ResultsAmong the eight stakeholders (Female:75%; Latinx ethnicity:88%), there were three physicians, one nurse, one patient with kidney disease who received a kidney transplant, one policy maker, one Doctor of Philosophy, and one executive director of a non-profit health organization. We identified five themes. The majority of themes and their respective subthemes (in parentheses) reflected barriers to engagement: Lack of personal relevance (unable to relate to research staff and marketing resources, and unclear benefit of research to self, family, and community); fear and vulnerability (immigration concerns, stigma with seeking care, skepticism of Western medicine); logistical and financial barriers (limited opportunities to enroll in clinical trials, out-of-pocket costs, transportation issues); and distrust and asymmetry of power (related to limited English proficiency or health literacy, and provider bias). The last theme centered on stimulating interest and establishing trust in the research process.ConclusionsTo overcome barriers to engagement in kidney-related research and establish trust among potential Latinx research participants, stakeholders recommended employing cultural responsiveness and community-based strategies. These strategies can help identify local health priorities, enhance research recruitment and retention strategies, and establish partnerships that continue to elevate research endeavors aiming to enhance the health of Latinx individuals with kidney diseases.