Trust In Medical Research Research Articles

Voluntariness of consent in paediatric HIV clinical trials: a mixed-methods, cross-sectional study of participants in the CHAPAS-4 and ODYSSEY trials in Uganda

ObjectivesTo examine the voluntariness of consent in paediatric HIV clinical trials and the associated factors.DesignMixed-methods, cross-sectional study combining a quantitative survey conducted concurrently with indepth interviews.Setting and participantsFrom January 2021...

Trust in Medical Research: A Comparative Study among Patients at a Regional Referral Hospital and Community Members in Lira District, Northern Uganda.

Events such as the Tuskegee syphilis study shaped how the public perceives and trusts medical research globally. However, few studies have examined trust in medical research in developing countries. We tested the hypothesis that levels of trust may be lower among community members compared to hospitalized persons in Uganda. We enrolled 296 participants in rural northern Uganda, and 148(50%) were from the community, 192(65%) were female. Mean level of trust for medical research was higher among hospitalized persons compared to community members (p = 0.0001). Previous research participation (p = 0.03), and willingness to participate in future research (p = 0.001) were positively associated with trust. Medical personnel should engage more with the communities in which they practice fostering trust in medical research.

“Do they REALLY trust us”?: Lessons from a volunteer research registry

Abstract Background: All IN for Health is a well-established community-academic partnership dedicated to helping improve the lives of Indiana residents by increasing health research literacy and promoting health resources, as well as opportunities to participate in research. It is sponsored by the Indiana Clinical and Translational Science Institute (I-CTSI). The study’s purpose was to measure trust in biomedical research and healthcare organizations among research volunteers. Methods: The Relationship of Trust and Research Engagement (RTRE) survey was developed utilizing 3 validated scales. The RTRE consisted of 36 items in a 5-point Likert scale with three open-text questions. We conducted 3 focus groups with a total of 24 individuals ahead of the survey’s launch. Recruitment was done through the All IN for Health newsletter. The survey was administered in the summer of 2022. Results: Six hundred and sixty-three individuals participated in the survey. Forty-one percent agreed that doctors do medical research for selfish reasons. Moreover, 50% disagree that patients get the same medical treatment regardless of race/ethnicity. Sixty-seven percent think it is safe to participate in medical research, yet 79% had never been asked to participate. Ten percent believe that researchers select minorities for their most dangerous studies and expose minoritized groups to diseases. Conclusion: The utilization of tools to measure trust will facilitate participant recruitment and will assist institutions and investigators alike in accountability. It is imperative, we work toward understanding our communities’ trust in medical research, assessing our own trustworthiness, and critically reflect on the authenticity of our efforts.

Perceptions of Brain donation and Medical Research Among African American Individuals: Implications for Recruitment and Retention into Alzheimer’s Research

AbstractBackgroundAfrican Americans (AAs) are twice as likely to have Alzheimer’s disease (AD) as their White counterparts; yet, this population is largely missing from brain donation research. According to the National Alzheimer’s Coordinating Center, merely 2% of brain donations are obtained from AAs. Medical mistrust among AAs has been well‐documented as a barrier to medical research participation. The purpose of this study was to expand our understanding of AA perceptions of medical research and brain donation.MethodUsing validated survey items, a 35‐item cross‐sectional survey was developed to understand attitudes and beliefs about medical research and brain donation among AAs. Surveys were administered via REDCap (Research Electronic Data Capture) and paper in Florida, New York, North Carolina and Ohio, United States from November 2021 to September 2022. Descriptive analysis of data on research participation and trust in medical research was conducted using SAS® software version 9.4.ResultA total of 227 AAs participated in this study with about three‐quarters of participants being female. Approximately 90% of AAs reported being born in the US, and nearly half of the sample reported receiving some college education or higher. Only 10.6% of participants reported being very likely to donate their brain to research after death. Despite the low percentage of AAs willing to donate their brain to research, 77.1% had a positive view of medical research and 72.7% trusted researchers in general. In fact, participants perceived that it is “very important” to participate in medical research to help future generations (78.4%), to learn more about AD (66.5%), and receive medical information (56.8%).ConclusionMost AAs in this study reported strong trust in medical research and researchers. Medical mistrust may not be a significant barrier to participation in brain donation or AD research for AAs in this sample. Improved health literacy in AD research and brain donation procedures may facilitate engagement of AAs to participate in such research. Findings from this study will be used to inform the development of a culturally relevant health literacy program, with a focus on brain donation and AD research, to enhance opportunities for recruitment and retention of AAs.

Defining research engagement with African American participants in Alzheimer’s disease research studies: A qualitative study

AbstractBackgroundDiverse recruitment of racial and ethnic groups affected by Alzheimer’s disease (AD) into research is an important public health priority. Black/African American older adults are more likely to develop AD compared to White older adults; however, representation of Black/African American individuals in AD research studies is estimated to be as low as 2.5 percent. Improved engagement with underrepresented communities is essential to increasing representation. Here, we define a theory of research engagement from a grounded theory approach in collaboration with Black/African American participants enrolled in two ongoing Alzheimer’s disease cohort studies at Vanderbilt University Medical Center.MethodVanderbilt Memory and Aging Project and Tennessee Alzheimer’s Project participants (n = 18, 68±10 years) who self‐identify as Black or African American were invited to participate in focus groups on research engagement. Focus groups were hosted in a community location. Pre‐discussion, participants completed the Measuring Trust in Medical Researchers scale. Each session lasting 90 minutes was moderated by a trained staff member, audio‐recorded, and subsequently transcribed. Data were analyzed following methodology described by Strauss and Corbin (1990, 1998) and modified by Charmaz (2006). Open coding to identify themes was independently conducted by 3 team members, and codes were refined using an iterative process.ResultThe overall mean score of trust in medical research was 43.9±7.4 (range = 36‐59) suggesting a moderate amount of trust. Participants expressed inclusion in the process and experiencing benefits from research as motivators for research engagement. Participants voiced a desire to better understand inclusion and exclusion criteria and an interest in hearing about the cohort and previously used methods of recruitment. Some members communicated the importance of a welcoming and passionate environment as a driver for engagement.ConclusionOur initial work defining research engagement identified key concepts important to our local community. Working together with the community to define research engagement helps immerse participants in the research process. These concepts are well established in the literature, and lessons learned from our focus groups will help define a theory of engagement with local context that can be used to evaluate our future activities.

An Update on the Building Bridges Study: Examining the effects of two interventions on trust in medical researchers and research attitudes among African American participants

AbstractBackgroundData suggest that establishing trust supports willingness to participate in research studies; yet there is a shortage of standardized systematic studies testing the effectiveness of various methods of building trust. The Building Bridges pilot study examined ways of establishing trust in communities of color comparing two different interventions.MethodUsing African American community leaders’ input, we conducted a mixed method study to investigate participants’ 1) preferred format for community‐based interventions, 2) comfort with discussing dementia with researchers/healthcare providers, and 3) attitudes of trust about research and researchers. African American subjects (age ≥ 45 years) without self‐reported cognitive impairment completed research attitudes (RAQ) and trust in medical researcher questionnaires, pre‐ and post‐intervention; individual medication reviews (n = 48) and/or public community talks (n = 49). Quantitatively, we compared pre‐ and post‐ intervention outcomes with paired Wilcoxon non‐parametric sign rank tests; all qualitative themes were analyzed using Nvivo QSR 12.ResultParticipants’ mean age was 64 (SD = 9.9). See Table 1 for demographics. Quantitatively, there was greater change in research attitudes and trust following a medication review intervention compared to experiencing a community talk (Figure 1); e.g., participants expressed “positive views about medical research in general” on questionnaires following medication reviews (p = 0.007). Qualitatively, we found a similar trend during our focus group discussions. Focus group members expressed more comfort with the medication review than the community talk resulting from “positive bedside manners, positive feedback, personal 1‐on‐1 interactions and race concordance.” Focus group participants noted a willingness to participate in future studies because of trust built from their Building Bridges team interactions. “Commonality, better connection, relatability, affinity and cultural similarities” all influenced trust and willingness to participate in future studies. Factors found to reduce trust included: “negative feedback, stereotypes, predominantly white practitioners in medicine and research, clinician unskillfulness, and not feeling seen as a “whole person” by providers” (Figure 2).ConclusionFindings continue to support our hypothesis that more personalized community engagement approaches have a greater influence on participants’ research attitudes and build interest in research. Additional studies of person‐centered recruitment strategies are essential to understanding how to improve trust and positive research attitudes among communities of color.

Community Trust, Attitudes and Preferences Related to Participation in Cancer Research in South Carolina.

African American adults have the highest mortality rate for most cancers in the United States, and meaningful, community-driven research is needed to inform optimal strategies for addressing these disparities. Unfortunately, research mistrust, often driven by historical inequities, is well-documented among African Americans.This study explored trust, attitudes, and preferences regarding participation in cancer research activities among primarily African American and other medically underserved communities in South Carolina from August 2020 to December 2021. Trust was measured using the Trust in Medical Researchers Scale (TMRS).The mean TMRS score for all study participants (N = 179) was 26.54 (SD 7.57) out of 48 (maximum possible score). Significant differences in mean values of the TMRS scores were only observed for gender (p = 0.0056) and race (p < 0.0001), with White participants and males reporting higher levels of trust in medical researchers. Overall, 52.5% of participants were somewhat likely or likely to volunteer to participate in a cancer research opportunity, with White participants (73.81%) being more likely to participate in cancer research compared to African American participants (45.74%) (p = 0.0054). Furthermore, participants were most willing to provide saliva (80.85%) and urine samples (80.85%), new blood samples (60.64%), stool samples (54.26%), medical records or laboratory results (52.13%) and least willing to allow left-over blood, tissue, or other fluids from medical procedures to be used for research (50%).These results provide evidence of the need for concerted programmatic efforts to build trust in cancer researchers, particularly among females and African American adults.

1154-P: Racially and Ethnically Inclusive Recruitment Strategies from the CoYoT1 to California (CTC) Study

Background: The prevalence of type 1 diabetes (T1D) is increasing within racially and ethnically marginalized populations, highlighting the need for effective recruitment strategies that not only address healthcare disparities but also rebuild trust in medical research. Recently, the CoYoT1 to California (CTC) study evaluated a person-centered care model designed to support racially and ethnically diverse young adults (YA) who receive care at a hospital-based pediatric T1D clinic. In addition to treatment effectiveness, the study examined the success of recruitment strategies. Methods: Potential YA participants were approached in-person or remotely (by phone, email, or text). Those with clinic appointments during study recruitment were approached in-person, with recruiters focusing on cultural humility to connect with families; the concept and process of research was introduced, and families were allowed to ask questions as needed. Remote recruitment utilized multiple pre- and post-appointment messages with basic descriptions of the study or follow-up details as needed. Categorical data were compared using chi-squared tests. Results: The study approached 338 potential participants and recruited 68 (20%). Reflecting successful recruitment of diverse YA, study participants were representative of the clinic population in terms of racial and gender identities, and identified as Latinx (29, 43%) more often than those who declined (100, 37%; P=0.40). Recruitment strategy was significantly associated with participation, as most participants were recruited in-person (40, 59%), while most who declined did so remotely (200, 74%; P&amp;lt;0.0001). Conclusion: In-person recruitment is more effective for enrolling diverse YA and their families, as it allows recruiters to build rapport, and empowers families with information and choice. Internal and external barriers may prevent diverse YA from attending clinic appointments in-person, ultimately impacting research equity. Disclosure F.Gonzalez: None. M.W.Reid: None. E.Salcedo-rodriguez: None. J.Flores garcia: None. S.Hiyari: None. A.Torres sanchez: None. E.Pyatak: Research Support; Abbott Diabetes. D.Fox: None. J.Raymond: None. Funding Patrick and Catherine Weldon Donaghue Medical Research Foundation

Community-Academic Initiative to Measure and Improve Underrepresented Group Participation in Parkinson’s Disease Research (P10-11.002)

<h3>Objective:</h3> To better understand the reason for lack of racial and ethnic diversity in Parkinson’s Disease (PD) clinical trials by measuring community members’ baseline knowledge of PD, trust of researchers, and willingness to participate in research. <h3>Background:</h3> PD clinical trial participants are disproportionately non-Hispanic Caucasian, creating limited generalizability of research findings. It is unclear why there is incommensurate rates of underrepresented group (URG) research participation; lower health literacy and lack of trust have been suggested as contributors. Community engagement through education on PD and associated studies has the potential to improve awareness and understanding of research, and in turn increase participation rates. <h3>Design/Methods:</h3> Four educational workshops with a total of 92 participants were held at community centers in URG-predominant Chicago neighborhoods. Pre- and post-workshop surveys qualitatively assessed participants’ knowledge of PD symptoms and signs, trust in medical researchers, and willingness to participate in clinical trials. <h3>Results:</h3> The majority of participants identified as either African American (35.9%) or Asian (37%). Survey results indicated that on the whole, community members were trustful of clinical researchers and had positive feelings towards research and researchers’ intentions. Participants were most open to participate in studies that could be done within their homes or offered financial compensation, and were least open to participate in studies that involved obtaining biological samples. Very few respondents had ever been asked to participate in a PD clinical trial before (8.1%). Respondents had a basic baseline understanding of PD, and tremor was the symptom most commonly identified as an early sign of PD (32.6%). <h3>Conclusions:</h3> Surveying predominantly AA and Asian community members of URG-rich Chicago communities revealed moderate to high levels of trust of researchers in these groups, and a willingness to participate in patient-centered clinical trials that mitigate barriers and include facilitators. <b>Disclosure:</b> An immediate family member of Ms. Marre has received personal compensation for serving as an employee of EMD Serono, Inc.. An immediate family member of Ms. Marre has received personal compensation for serving as an employee of MFS Investment Management. Ms. Marre has received research support from Office of Undergraduate Research which is administered by Northwestern University’s Office of the Provost. Emily Zivin has nothing to disclose. Karen Williams has nothing to disclose. Mr. Shramuk has received personal compensation for serving as an employee of Northwestern University. Ms. Lancki has nothing to disclose. Dr. Adrissi has nothing to disclose. Dr. Larson has received personal compensation in the range of $0-$499 for serving as a Consultant for Acadia Pharmaceuticals.

245 Do they REALLY Trust Us?: The Importance of Trust and Trustworthiness in All IN for Health

OBJECTIVES/GOALS: The critical role that trust plays continues to be documented and highlights the gap in understanding the extent to which initiatives such as All IN for Health from the Indiana Clinical and Translational Institute (I-CTSI) can improve trust between the community and researchers. We discuss measures of trust and evaluate how we may improve recruitment. METHODS/STUDY POPULATION: In this study, we invited over 13000 volunteers from the All IN for Health research participant registry. Six hundred and sixty-three (663) respondents participated in the survey. The Relationship of Trust and Research Engagement Survey included three validated surveys: Distrust in Healthcare Organizations, the Trust in Medical Researchers scale by Hall et. al, and Patient Trust in Medical Researchers by Mainous et al.. The 36-item survey also included open-text questions. RESULTS/ANTICIPATED RESULTS: Based on preliminary results 74% agreed it’s safe to be in medical research, yet 79% had never been asked to participate in medical research by their doctor. Sixty percent believed that HCOs put money above patients’ needs. Forty percent agreed that doctors do medical research for selfish reasons. Fifty percent disagree that patients get the same medical treatment regardless of race/ethnicity. Moreover, 28 % agree that medical researchers act differently toward minorities. Between 9 and 11% believe that researchers select minorities for their most dangerous studies and some projects are secretly designed to expose minoritized groups to diseases. Our next step is to disaggregate the data by race and ethnicity and evaluate these answers. DISCUSSION/SIGNIFICANCE: This study's population willingly engaged in a research registry making their diminished trust quite alarming. Amongst the general population, trust in scientists is now below pre-pandemic levels. We must critically assess our own trustworthiness, and critically reflect on the authenticity of our efforts.

Accounting for the High Enrollment of African Americans on Winship Cancer Institute's Myeloma Clinical Trials.

Thirty-four percent of Multiple Myeloma (MM) clinical trial participants at Winship Cancer Institute (Winship) are African American (AA); however, AAs make up only 4.5 percent of myeloma clinical trial participants in the United States. Given our high enrollment, we aimed to measure AAs' trust in providers and identify if clinical trial enrollment barriers exist. A member of the ethics research team surveyed AA patients who had consented to a MM clinical trial at Winship. Three validated surveys were used: Trust in Medical Research (TMR); Human Connection (THC) which measures how much patients feel they are heard and valued by their physicians; and the Duke Intrinsic Religiosity Scale (DUREL) which measures strength of religious engagement and belief. The survey also included questions about the impact of side effects, distance to the trial center and trial related costs on the decision to participate in clinical trial. Ninety-two percent (61/67) of patients approached consented. The mean TMR score and the mean THC score were significantly higher (P-value < 0.001) than the results obtained in key national surveys (TMR 14.9 compared to 11.65; THC 57.7 compared to 54.6). These two surveys were significantly correlated, meaning trust and human connection increase or decrease in tandem. The 3 religiosity subscale results showed high religiosity (3.84, 4.36, and 4.35 with 5 being the highest score). The mean scores of the importance of the investigational agent's side effects, trial costs, and distance to trial center on the decision to enroll in a clinical trial were also high (8.5, 7.8, and 6.5, respectively, with 10 being the most important). In our study population, high trust and human connection overcame other trial participation barriers: strong religious beliefs and concerns about side effects, costs, and travel distance. We present a roadmap to guide investigators to increase human connection, and hopefully trust.

Knowledge Of Genome Sequencing In Relation To Trust In Medical Researchers Among Patients With Idiopathic Dilated Cardiomyopathy

Knowledge Of Genome Sequencing In Relation To Trust In Medical Researchers Among Patients With Idiopathic Dilated Cardiomyopathy

Relationship of Trust and Research Engagement

&#x0D; &#x0D; &#x0D; Background/Objective:&#x0D; Lack of trust is a major barrier to research participation and can lead to disparities in health outcomes. Scales that measure trust in healthcare organizations and biomedical research have never been synthesized into a single tool, nor has such a scale been used to assess attitudes regarding trust in a more focused community. This project aims to measure trust in medical researchers and healthcare institutions in Indiana.&#x0D; Methods:&#x0D; A survey was created by combining previously validated trust scales (Shea et al., Mainous et al., and Hall et al.) along with questions about demographic backgrounds. Cognitive interviewing was conducted in three focus groups to finalize survey questions. The questionnaire was sent to participants recruited via email from the All IN for Health registry, a statewide database of volunteers interested in research participation.&#x0D; Results:&#x0D; At the time of analysis, 481 participants had completed the survey. About half of respondents were age 60+, and almost three times more women participated than men. The majority had bachelor's degrees or higher (72.5%). About half of participants agree that healthcare organizations cover up their mistakes. Half disagreed that patients get the same medical treatment regardless of race/ethnicity. Almost one in five respondents (17.4%) believe that medical researchers conduct experiments on people without their knowledge.&#x0D; Conclusion:&#x0D; Preliminary results suggest additional efforts may be needed to foster trust in healthcare research and organizations. Results may not be generalizable to the entire population due to differences in gender, race/ethnicity, and level of education across initial respondents. One limitation is that recruitment using the All IN for Health registry may have produced biased results. Further studies are needed to understand factors that may influence trust.&#x0D; Scientific/Clinical/Policy Implications:&#x0D; Results may influence public outreach and research recruitment to gain trust from Indiana residents and enhance participation in medical research.&#x0D; &#x0D; &#x0D;

Mechanisms by Which Cultural-Centric Narrative Influences Interest in ADRD Research Among African American Adults.

Insufficient ethnoracial diversity is a pervasive challenge in Alzheimer's disease (AD) research. The Recruitment Innovations for Diversity Enhancement (RIDE) is grounded in the premise that culturally informed narratives of research participation can inspire individuals from a given culture-sharing group to consider research enrollment. This study examines factors associated with interest in AD research among Black or African American adults following exposure to RIDE narrative campaign materials. A community-based sample of 500 Black or African American adults viewed RIDE narrative materials online and completed a survey of perceptions about research, AD risk, and likelihood of enrolling in AD research. Logistic regression examined predictors and mediators of self-reported likelihood of participating in AD research. Most (72%) participants reported interest in being contacted for AD research opportunities. After controlling for key variables, prior experience with clinical research and trust in medical researchers emerged as independent predictors of likelihood of enrolling in AD research. Perceived burden of AD research partially mediated the effects of prior research experience and trust on likelihood of enrollment. Perceived benefits of AD research also played a mediating role, accounting for over one third of the effect of trust on likelihood of enrollment. This study advances the field's understanding of how narrative may function to enhance diversity in AD research. Findings suggest that participant narratives should address experiences regarding the burdens and potential benefits of AD research participation as these factors may influence decisions leading to subsequent research enrollment.

Mechanisms by which culturally‐informed narratives may promote ADRD research enrollment among African American adults

AbstractBackgroundInsufficient racial and ethnic diversity is a pervasive challenge in clinical research on Alzheimer’s disease (AD). The Recruitment Innovations for Diversity Enhancement (RIDE) in AD research study is grounded in the premise that culturally informed narratives of research participation can inspire other individuals from a given culture‐sharing group (in this case, African Americans) to consider enrolling in research. RIDE involved developing and disseminating narrative materials to share the research participation experiences of African American adults who are enrolled in AD research with those who are not. The current analysis aims to examine factors associated with interest in AD research following exposure to RIDE narrative campaign materials.MethodA community‐based sample of 500 individuals, primarily in mid to late life, identifying as Black or African American adults were invited to view a RIDE study video (∼2 minute story of AD research participation) online and complete a survey of perceptions about research and researchers, AD risk, and likelihood of enrolling in AD research. Logistic regression models were used to identify predictors of self‐reported likelihood of participating in AD research and potential mediators were tested to examine the causal pathway between predictors and likelihood of enrollment.ResultMost (n = 376; 72%) participants reported interest in being contacted to learn more about local AD research opportunities. After controlling for demographic variables and perceived AD risk, prior experience with clinical research and trust in medical researchers emerged as independent predictors of likelihood of enrolling in AD research. Mediation analysis revealed that perceived burdens of AD research mediated 40.5% of the effect of prior research experience and 25.3% of the effect of trust on likelihood of enrollment (P&lt;0.05). Perceived benefits of AD research also played a mediating role, accounting for 35.3% of the effect of trust on likelihood of enrollment (P = 0.006).ConclusionThis study is a first step to understand the mechanisms by which narrative may function to enhance diversity in AD research. Findings suggest that participant narratives should address experiences that speak to the burdens and potential benefits of AD research participation as these factors may influence decisions leading to subsequent research enrollment.

Knowledge of Genome Sequencing and Trust in Medical Researchers Among Patients of Different Racial and Ethnic Groups With Idiopathic Dilated Cardiomyopathy

Cardiovascular disease contributes outsized mortality in patients from underrepresented racial and ethnic groups. Understanding levels of trust in medical researchers and knowledge of genome sequencing may help identify barriers to research participation and develop strategies to educate patients about the role of genetics in cardiovascular disease. To assess racial and ethnic differences in trust in medical researchers and genome-sequencing knowledge among patients with idiopathic dilated cardiomyopathy and determine the association between trust in medical researchers and genome-sequencing knowledge. This cross-sectional study conducted by a consortium of 25 US heart failure programs included patients with idiopathic dilated cardiomyopathy defined as left ventricular systolic dysfunction and left ventricular enlargement after excluding usual clinical causes. Enrollment occurred from June 7, 2016, to March 15, 2020. Percent distributions, means, and associations of genome-sequencing knowledge scores and research trust scores for Hispanic, non-Hispanic Black (hereafter referred to as Black), and non-Hispanic White participants (hereafter referred to as White). Among 1121 participants, mean (SD) age was 51.6 (13.6) years with 41.4% Black, 8.5% Hispanic, and 43.4% female. After accounting for site effects, the level of genome-sequencing knowledge was lower in Hispanic and Black participants compared with White participants (mean score difference, -2.6; 95% CI, -3.9 to -1.2 and mean score difference, -2.9; 95% CI, -3.6 to -2.2, respectively). The level of trust in researchers was lowest in Black participants (mean score, 27.7), followed by Hispanic participants (mean score, 29.4) and White participants (mean score, 33.9). Racial and ethnic differences remained after adjusting for education, age at enrollment, duration of dilated cardiomyopathy, and health status. A higher level of trust was associated with a higher level of genome-sequencing knowledge within different racial and ethnic groups. In this cross-sectional study, large racial and ethnic differences in levels of genome-sequencing knowledge and trust in medical researchers were observed among patients with dilated cardiomyopathy. Findings from this study can inform future studies that aim to enhance the uptake of genomic knowledge and level of trust in medical researchers.

Willingness to participate in biobanking: The roles of Big Five personality traits and interpersonal trusting beliefs

Health-related philanthropy is essential for biobanks. Nonetheless, little is known about the roles of personality and trust in particular with respect to participation in biobanking. In a sample of 600 Slovaks, the present study aimed to examine whether the Big Five personality traits and interpersonal trusting beliefs, namely self-focused generalised trust, other-focused generalised trust and trust in medical researchers, predicted the willingness to participate in biobanking. The results showed that self-focused generalised trust and trust in medical researchers positively predicted the willingness to participate in biobanking, while the Big Five personality traits and other-focused generalised trust did not. The findings highlight the importance of distinguishing between different interpersonal trusting beliefs and can be applied in communication and recruitment strategies attempting to attract participants of biobanking.

Retaining Participants in Longitudinal Studies of Alzheimer's Disease.

Retention of study participants is essential to advancing Alzheimer's disease (AD) research and developing therapeutic interventions. However, recent multi-year AD studies have lost 10% to 54% of participants. We surveyed a random sample of 443 participants (Clinical Dementia Rating [CDR]≤1) at four Alzheimer Disease Research Centers to elucidate perceived facilitators and barriers to continued participation in longitudinal AD research. Reasons for participation were characterized with factor analysis. Effects of perceived fulfillment of one's own goals and complaints on attendance and likelihood of dropout were estimated with logistic regression models. Open-ended responses suggesting study improvements were analyzed with a Latent Dirichlet Allocation topic model. Factor analyses revealed two categories, personal benefit and altruism, as drivers of continued participation. Participants with cognitive impairment (CDR > 0) emphasized personal benefits more than societal benefits. Participants with higher trust in medical researchers were more likely to emphasize broader social benefits. A minority endorsed any complaints. Higher perceived fulfillment of one's own goals and fewer complaints were related to higher attendance and lower likelihood of dropout. Facilitators included access to medical center support and/or future treatment, learning about AD and memory concerns, and enjoying time with staff. Participants' suggestions emphasized more feedback about individual test results and AD research. The results confirmed previously identified facilitators and barriers. Two new areas, improved communication about individual test results and greater feedback about AD research, emerged as the primary factors to improve participation.

A nutrition and lifestyle-focused shared medical appointment in a resource-challenged community setting: a mixed-methods study

BackgroundIn order to address disparities in preventable chronic diseases, we adapted a nutrition and lifestyle-focused shared medical appointment (SMA) program to be delivered in an underserved community setting. The objective was to evaluate a community-based nutrition and lifestyle-focused SMA as it relates to acceptability and health and behavior-related outcomes.MethodsA mixed-methods study was performed to evaluate pre-post changes in wellness indices, biometrics, self-efficacy, and trust in medical researchers as part of a community-based SMA. To understand program acceptability including barriers and facilitators for implementation and scalability, we conducted two participant focus groups and five stakeholder interviews and used content analysis to determine major themes.ResultsFifteen participants attended 10 weekly sessions. The majority were older adult, African American women. There were pre-post improvements in mean [SD] systolic (-10.5 [7.7] mmHg, p = 0.0001) and diastolic (-4.7 [6.7] mmHg, p = 0.17) blood pressures and weight (-5.7 [6.3] pounds, p = 0.003) at 3 months though these were not significant at 6 months. More individuals reported improvements in health status, daily fruit and vegetable intake, and sleep than at baseline. There were no significant pre-post changes in other wellness indices, self-efficacy, trust in medical researchers, hemoglobin A1c, insulin, or LDL cholesterol. Participants discussed positive health changes as a result of the SMA program, program preferences, and facilitators and barriers to continuing program recommendations in focus groups. SMA implementation was facilitated by clinical staff who adjusted content to a low health literacy group and partnership with a trusted community partner. Sustainability barriers include heavy personnel time and in-kind resources to deliver the program.ConclusionsNutrition and lifestyle-focused SMAs in a resource-challenged community setting may be an acceptable intervention for underserved patients.

Willingness to Participate in Clinical Research Among Individuals With Cognitive Impairment.

This secondary analysis examined (1) factors associated with willingness to participate in clinical research for cognitive health among individuals with cognitive impairment and their care partners, and (2) concordance regarding such willingness between individuals with cognitive impairment and their care partners (dyads). Neuropsychological factors and willingness to participate in clinical research were collected using self-reported questionnaires. Participants' sociodemographic and clinical information was extracted from the University of Pittsburgh Alzheimer's Disease Research Center record. Binary logistic regression and Cohen's kappa coefficient analyses were performed. Greater trust in medical researchers (p = 0.031, B = 0.127) and more severe cognitive impairment (p = 0.009, B = -0.289) were associated with willingness to participate in clinical research among individuals with cognitive impairment. Dyadic agreement on willingness to have the individual with cognitive impairment enroll in clinical research was poor to fair (κ = 0.380). Findings suggest that individuals with cognitive impairment with greater trust in health professionals are more likely to agree to clinical research participation. Nurses and other health care providers who counsel individuals with cognitive impairment and their care partners should work to build trusting relationships with participants and be mindful of how increased trust can alter power dynamics between participants and health care professionals. [Research in Gerontological Nursing, 15(2), 76-84.].