Exploring Trust in Research Among Black American Men at a Health Promotion Symposium in Rural North Carolina.

Despite efforts to diversify research and health programs, Black American men remain a "hard-to-reach" population while collectively suffering from some of the worst health outcomes in the United States. Faith- and community-based approaches have shown potential to engage Black Americans in health promotion and health research activities. The purpose of this article is to examine health research participation and trust in research among a sample of Black American men in rural North Carolina who attended a community-based health symposium, culturally tailored for Black American men (n = 112). A cross-sectional survey was administered among men to learn about health status, health concerns, and perception of health research. Among 106 men who completed the survey, most reported no prior participation in health research (68.87%), but almost a third of men reported interest in participating in health research. No significant differences in trust in research was found based on interest in research participation (interested in research participation, not interested in research participation, no response), presenting an opportunity to increase the trustworthiness of medical institutions and build relationships with this population. These findings will inform future research and health programming for Black American men in rural locations.

Comparative analysis of factors and barriers intervening in research participation among romanian and international medical graduates from one romanian medical faculty across three generations.

OBJECTIVES: This study focuses on the factors that encouraged engagement in research activities, as well as the barriers that restricted their involvement, until the final year of study at Iuliu Hatieganu University of Medicine and Pharmacy Cluj-Napoca, Faculty of Medicine. The main objectives of this study are to investigate potential disparities in research culture and student engagement in various research opportunities between Romanian and international medical graduates, as well as to conduct an examination of the observed patterns across various graduating years (2021-2023). MATERIALS AND METHODS: A cross-sectional investigation was conducted among graduate students of the Faculty of Medicine at the Iuliu Hațieganu University of Medicine and Pharmacy in Cluj-Napoca, Romania. From 2021 to 2023, all graduate students from the Romanian and international programs of the faculty were asked to participate in the study by filling out an anonymous online questionnaire. The final sample included 572 participants, of whom 392 were students from the Romanian section and 180 were students from international programs. RESULTS: Motivation and personal interest drive research engagement, according to over half of graduates. For over one-third of graduates, institutional elements like financial support and education also play a major role, as does the desire to enhance their curriculum vitae. More than 25% of graduates value community influence, 70% of graduates attended medical congresses, 12-15% presented papers at medical conferences, 23% wrote medical articles, 10-15% published at least one scientific paper in medical journals, and 20% participated in medical school research projects. Comparative analysis showed that Romanian students start research earlier, attend more medical conferences, present posters, collect data for studies, and are more interested in publishing graduation thesis data in scientific journals. To encourage international students to participate in research, the study found that colleagues' examples were more important, and both time and funds were key barriers. The research also shows that 2022 and 2023 graduates will organize more scientific conferences. According to the study, 2022 graduates began their research earlier than others. CONCLUSIONS: To increase student engagement in research activities, medical schools should prioritize the promotion of positive factors, minimize common barriers, offer customized support and resources, encourage collaborative research activities, and facilitate cross-cultural learning.

Global hepatitis B and D community advisory board: expectations, challenges, and lessons learned.

Introduction: Community Advisory Boards (CABs) play an important role in developing and delivering patient-centered care. However, the impact of participation on CAB members has not been well studied, particularly on the global scale. In 2022, the Hepatitis B Foundation (HBF) convened the first global hepatitis B and hepatitis delta CAB with 23 members from 17 countries, representing six out of the seven World Health Organization (WHO) regions, and countries with the largest hepatitis B and hepatitis delta disease burden. Methods: To reflect on the process of assembling an effective and motivated CAB and assess the impact on CAB participants, three virtual focus group sessions were held with 16 participants in July and August 2023. Sessions were recorded and transcribed. Questions focused on motivations for joining the CAB, membership experiences, and lessons learned. Grounded theory analysis was used to generate hypotheses about reasons for CAB members' participation, as well as challenges and suggestions. Qualitative analysis using inductive reasoning identified key themes within responses. Transcripts were independently analyzed by a primary and secondary coder. Results: Motivations for joining the CAB included participants' desire to advocate for people living with hepatitis B and hepatitis delta, and other altruistic factors. Participants reflected that through CAB membership, they gained networking and advocacy opportunities and enhanced their hepatitis B- and hepatitis delta-related knowledge. Challenges participants experienced were related to time, physical limitations, and stigma. Finally, participants discussed their limited direct engagement with drug developers and proposed ways the CAB can increase interactions with stakeholders going forward. Discussion: Based on participants' assessments, establishing a global CAB for stigmatized infectious diseases is worth the effort. Regular internal review of community advisory boards' structure and performance is critical to ensure the CAB is fulfilling its mission.

Exploring What Motivates Parents of Children Living With Medical Complexity to Participate in Research.

BACKGROUND: The study aimed to understand the experience of and identify the motivations for parents participating in health research for their children with medical complexity (CMC). Patient-oriented research strategies are increasingly important in health research to ensure that the voices of patients and parents help shape and direct research programmes. To bring a family-centred and patient-oriented focus to our research and objectives, we asked parents about their experiences when they participated in healthcare research related to their child with CMC. METHODS: A parent partner, who also has a CMC, interviewed 12 parents (11 mothers and 1 father) of children living with medical complexity to understand their motivations to participate in healthcare research for their child. The parent partner conducted and transcribed the interviews and led our data analysis. Interpretive phenomenological analysis (IPA) was used to inform our data coding and analytic process. RESULTS: Parents described numerous reasons for their participation in research about their children. These motivations landed within four main themes: feeling helpless and hopeful, child-centred motivation, being part of something good and forming a relationship with the research team. In addition to these themes, parents highlighted factors that influenced their ability or desire to participate, such as time, capacity and the level of invasiveness for their child. Ultimately, the reflections by parents emphasized their unique lives in caring for their CMC and the need to integrate their lived experiences with the research they engage in. CONCLUSION: This study offers important insights for healthcare teams who want to engage parents of CMC to participate in research. Understanding parents' motivation to participate in research can help researchers create richer engagement and more meaningful experiences for themselves and their participants, thereby bolstering research programmes.

Effects of a waiting list control design on alcohol consumption among online help-seekers: A randomised controlled trial.

BACKGROUND: Indirect evidence suggests that using waiting list control designs in behavioural research may have unintended consequences. The aim of this study was to estimate the effects of a waiting list design on alcohol consumption among individuals who had looked online for help. METHODS: A two-arm randomised controlled trial was employed. The intervention group was informed that they belonged to the intervention group and would receive immediate access to a digital alcohol intervention. The waiting list control group was informed that they belonged to the group that had to wait four weeks to be given access to the intervention and in the meantime, they would be given a summary of their drinking. However, both groups received immediate access to the same digital alcohol intervention; the experimental contrast was thus between being told to wait or not. RESULTS: We randomised 3388 participants (intervention: 1692, waiting list: 1696). Data were available for 954 participants at 1-month follow-up. We found no strong evidence that alcohol consumption differed between groups, but the evidence pointed towards the intervention group reporting lowering weekly alcohol consumption compared to the waiting list control group (IRR = 0.95, 95 % CI = 0.83; 1.08, probability of effect = 78.8 %). CONCLUSION: We found no strong evidence that being informed that access to an intervention would be delayed produced differential self-reported alcohol consumption compared to being informed that access would be immediate. We did find a difference in engagement with the intervention materials, indicating that the experimental manipulation was successful.

'Keeping it real': A qualitative exploration of preferences of people with lived experience for participation and active involvement in mental health research in Australia.

BACKGROUND: Historically, researchers have been apt at conducting research on, rather than with, the people who are the focus of their efforts. Such approaches often fail to effectively support and benefit the populations they are intended to. This study aimed to explore the preferences of people with lived experience for engagement with research either as research participants within studies, or through active involvement in mental health research. METHODS: Data for this paper were collected in three separate lived experience agenda-setting studies conducted over a 9-year period from 2013 to 2022; two group discussions and an open-ended online survey. Data were combined and thematic analysis undertaken. RESULTS: Participants described the inclusion of lived experience as a critical ingredient and the highest level of knowledge and expertise in mental health research that should lead to knowledge generation and research agendas. Participants discussed the importance and value of research that enables sharing experiences and stories, expressed a need for flexibility in research methods for choice and agency, and support for greater active involvement of people with lived experience across all stages of research. Participants also spoke to the need for perspective and knowledge generated from people with lived experience to have equal power in research, making space for lived experience voices across multiple aspects of research, and greater respect and recognition of the value of lived experience. CONCLUSION: Lived experience in mental health research is coming of age, but dedicated, cocreated development is needed to get it right. People with lived experience increasingly understand the value their experiential knowledge brings to the mental health research effort, and describe a wide range of ways that researchers can support them to be research participants, and to get actively involved. Power-sharing, respect and recognition of lived experience as central to effective mental health research are the keys to 'keeping it real'. PATIENT OR PUBLIC CONTRIBUTION: People with lived experience of mental health problems or distress either personally, and/or as carers, family and kinship group members, were involved in the coideation and codesign of this research. All authors identify as people with lived experience.

It got me thinking: The impact of participating in a divorce decision-making interview.

Although there is literature documenting the reasons for and outcomes of divorce, there is limited research about the divorce decision-making process. Researchers with the National Divorce Decision-Making Project interviewed (n = 30) people in the process of making a divorce decision. One year later they conducted a second interview (n = 22) with the same sample to track any changes in participants' divorce ideation. The current study reports on the results of a thematic analysis of participants' responses to the final question, "How did the initial interview impact your thinking about the future of your marriage?" Three salient themes emerged from the data: (1) talking got me thinking, (2) thinking got me acting, and (3) the conversation was (surprisingly) therapeutic. The authors highlight possible clinical implications and directions for future research.

Research, Science Identity, and Intent to Pursue a Science Career: A BUILD Intervention Evaluation at CSULB.

This paper presents an analysis of survey data to examine the association between participating in one of the National Institute of Health's (NIH) funded Building Infrastructure Leading to Diversity Initiative (BUILD) program and students' intent to pursue a career in science. Data were collected from students at California State University Long Beach (CSULB) to examine the effectiveness of the BUILD Scholars program. Both BUILD Scholars and non-BUILD students were surveyed. Propensity score matching was used to generate the non-BUILD comparison group. Multinomial logistic regression results revealed that students participating in the BUILD intervention were associated with significantly higher intent to pursue a career in science. Results also showed the importance of variables such as science identity and research participation when assessing interest in science careers. These findings have implications for STEM program evaluation and practice in higher education.

Disparities in Congenital Cytomegalovirus (cCMV) Postpartum Newborn Screening Research Participation.

OBJECTIVE: The objective of this study is to evaluate if racial and other demographic disparities exist between patients who enrolled or declined participation in a congenital cytomegalovirus (cCMV) newborn universal screening research study. METHODS: We examined characteristics for patients approached over a 2-year period to participate in a cCMV newborn screening study. Maternal characteristics included age, race, ethnicity, preferred language, interpreter need, insurance type, and number of living children. Recruitment period was also examined (pre-pandemic January 1 to December 31, 2019, and during COVID-19 July 1, 2021 to June 30, 2022). Characteristics were compared for patients who enrolled in the study and those who declined participation using descriptive statistics and logistic regression. RESULTS: Of the study sample (n = 4156), 3148 (75.7%) patients enrolled and 1008 (24.3%) declined. Declined participation rates were 47.2% among non-Hispanic (NH) Black patients and 15.7% among NH White patients. In the final adjusted model, NH Black patients (OR 3.14, 95% CI 2.53-3.90), those with public insurance (OR 1.81, 95% CI 1.48-2.22), and those with four or more children (OR for 4 + children 1.45, 95% CI 1.11-1.90) were the most likely to decline research participation. CONCLUSIONS: NH Black and NH multiracial patients were among the most likely patient groups to decline study participation. These groups have previously been identified to be at increased risk for cCMV. This differential participation in cCMV research could result in underreported estimates of prevalence. Future cCMV research, including surveillance studies, should include documentation of differential participation to both address efforts to improve research participation and document and address potential bias in results.

"They should ask me so that they can help me": Patterns of young children's expressed feelings and beliefs when interviewed about violence and difficult experiences.

BACKGROUND: Children's participation in research is a rights-based principle. However, young children are often excluded from research on sensitive topics, due to gatekeepers concerns that participation would cause distress/re-traumatization and conflict with the principle of providing adequate protection from harm. OBJECTIVE: To provide evidence around young children's feelings, including potential distress, and beliefs in mixed-method interviews about violence and difficult experiences. PARTICIPANTS AND SETTING: Data were collected from South African interviewer focus group discussions and young child (age 6-10) interviews, along with observations and fieldnotes from young child (age 6-17) interviews. METHODS: We collected and analyzed qualitative data focused on children's displayed and reported emotions and beliefs in violence-focused interviews. RESULTS: Findings showed the quantitative interview was frequently a positive experience for young children, and children who became upset or emotional stated their feelings were due to violence they experienced. The interviewer seemed to represent a safe person to whom the child could disclose. The play- and arts-based methods of the interview were useful in building this safety and providing space for children to regulate difficult emotions. CONCLUSIONS: In a carefully managed interview environment using developmentally appropriate methods, young children are enthusiastic participants and do not appear to experience undue distress or trauma when asked about violence and other sensitive topics. Findings demonstrate that young children can be safely included in research about violence and issues that impact them and can exercise their right to participation when research methods, environments, and safeguards are appropriately adapted to their needs.

COVID-19 clinical trials: who is likely to participate and why?

Aim: To identify factors associated with willingness to participate in a COVID-19 clinical trial and reasons for and against participating. Materials & methods: We surveyed Massachusetts (MA, USA) residents online using the Dynata survey platform and via phone using random digit dialing between October and November 2021. Respondents were asked to imagine they were hospitalized with COVID-19 and invited to participate in a treatment trial. We assessed willingness to participate by asking, "Which way are you leaning" and why. We used multivariate logistic regression to model factors associated with leaning toward participation. Open-ended responses were analyzed using conventional content analysis. Results: Of 1071 respondents, 65.6% leaned toward participating. Multivariable analyses revealed college-education (OR: 1.59; 95% CI: 1.11, 2.27), trust in the healthcare system (OR: 1.32; 95% CI: 1.10, 1.58) and relying on doctors (OR: 1.77; 95% CI: 1.45, 2.17) and family or friends (OR: 1.31; 95% CI: 1.11, 1.54) to make health decisions were significantly associated with leaning toward participating. Respondents with lower health literacy (OR: 0.57; 95% CI: 0.36, 0.91) and who identify as Black (OR: 0.40; 95% CI: 0.24, 0.68), Hispanic (OR: 0.61; 95% CI: 0.38, 0.98), or republican (OR: 0.61; 95% CI: 0.38, 0.97) were significantly less likely to lean toward participating. Common reasons for participating included helping others, benefitting oneself and deeming the study low risk. Common reasons for leaning against were deeming the study high risk, disliking experimental treatments and not wanting to be a guinea pig. Conclusion: Our finding that vulnerable individuals and those with lower levels of trust in the healthcare system are less likely to be receptive to participating in a COVID-19 clinical trial highlights that work is needed to achieve a healthcare system that provides confidence to historically disadvantaged groups that their participation in research will benefit their community.

Neuropsychological and social predictors of participation in a deep brain stimulation study of Parkinson's disease and dystonia.

Objectives: Participation is essential to DBS research, yet circumstances that affect diverse participation remain unclear. Here we evaluate factors impacting participation in an adaptive DBS study of Parkinson's disease (PD) and dystonia. Methods: Twenty participants were implanted with a sensing-enabled DBS device (Medtronic Summit RC+S) that allows neural data streaming in naturalistic settings and encouraged to stream as much as possible for the first five months after surgery. Using standardized baseline data obtained through neuropsychological evaluation, we compared neuropsychological and social variables to streaming hours. Results: Marital status and irritability significantly impacted streaming hours (estimate=136.7, bootstrapped ( b ) CI b =45.0 to 249.0, p b =0.016, and estimate=-95.1, CI b =-159.9 to -49.2, p b =0.027, respectively). These variables remained significant after multivariable analysis. Composite scores on verbal memory evaluations predicted the number of hours of data streamed (R 2 =0.284, estimate=67.7, CI b =20.1 to 119.9, p b =0.019). Discussion: Verbal memory impairment, irritability, and lack of a caregiver may be associated with decreased participation. Further study of factors that impact research participation is critical to the sustained inclusion of diverse participants.

Vietnamese Americans' level of trust in sources of information and willingness to participate in COVID-19 clinical trials.

The survey investigates COVID-19 information source trust levels and Vietnamese Americans' willingness to participate in clinical trials. An analysis of 212 completed surveys revealed that trust in coronavirus disease 2019 (COVID-19) clinical trial information from university hospitals and drug companies was associated with willingness to participate in clinical trials. Trust in COVID-19 information from federal governments and state governments was also associated with willingness to participate in clinical trials. However, trust in local health facilities was linked to trial participation reluctance. The results suggest that Vietnamese Americans' participation in clinical trials can be increased by identifying and using trusted sources of information.

"Let them be": Family members' perspectives on the participation of advanced cancer patients in nursing research: A qualitative descriptive study.

BACKGROUND: Recruiting advanced cancer patients is crucial for nursing research in cancer care. However, nurse researchers often face various socio-cultural challenges, particularly in mainland China, where cultural taboos around death pose significant obstacles. An unexplored constraint in this context is the pivotal role Chinese family members play in patients' healthcare decision-making. This research gap underscores the need for a deeper understanding of Chinese family members' perspectives on the engagement of advanced cancer patients in nursing research. OBJECTIVE: To explore the perceptions and concerns of family members regarding the recruitment and participation of advanced cancer patients in nursing research. DESIGN: A qualitative descriptive study was conducted. SETTINGS: Three cancer hospitals in mainland China. PARTICIPANTS: A purposive sample of 18 family members, consisting of children or spouses of advanced cancer patients, was recruited as participants. METHODS: Semi-structured interviews were conducted to collect data between September 2022 and January 2023. The thematic analysis method was used to analyze the data. RESULTS: Three themes were identified: The absence of prior participation, Family members' reluctance to facilitate patient involvement, and Strategies to encourage patients' future participation. Family members were hesitant to allow their relatives with advanced cancer to engage in nursing research, primarily due to concerns about distressing patients, the use of potential sensitive language, stigma, and the risks involved in participation. To address these concerns, they emphasized the importance of gaining family approval prior to patient enrolment. They highlighted the need of family involvement on behalf of sick relatives in research, advocating for the inclusion of a wide range of patients rather than targeting specific subgroups. They also reiterated the significance of choosing the right time for participation and avoiding using sensitive terms such as 'cancer', 'dying', and 'death' when engaging with patients. Moreover, they proposed the recruitment of patients by trusted professionals, shortening the duration of research activities and simplifying research procedures. CONCLUSIONS: This study provides fresh insights into the perspectives of family members concerning the recruitment and engagement of advanced cancer patients in nursing research. It emphasizes the importance of addressing their concerns and recommendations, aiding nurse researchers in developing culturally sensitive recruitment strategies and fostering the inclusive participation of advanced cancer patients in nursing research within the context of family-centered care and cultural taboos surrounding death.

Access to and interest in human milk research opportunities among Black pregnant and postpartum people.

Background: Concerns exist regarding biomedical research participation in marginalized and historically disadvantaged communities. Objectives: The purpose of this study was to understand critical barriers to participation in human milk research from the perspective of Black pregnant and postpartum people. Methods: A national sample of Black pregnant and postpartum people (n = 104) was recruited to complete a cross-sectional online survey informed by the Life Course Perspective. Survey questions assessed research experiences and preferences, particularly related to human milk research, knowledge of historical events/policies targeting Black communities, and demographic characteristics. A socio-economic composite score was calculated as an indicator of socio-economic advantage. Survey data were summarized descriptively and potential correlates of research engagement were evaluated. Results: Most (69%, n = 71) respondents reported previous participation in a research study, yet only 8 (8%) reported ever being asked to participate in a breastfeeding/chestfeeding or human milk study, and one respondent was unsure. Despite so few having been asked, 59% (n = 61) of respondents indicated they would donate breast/human milk to research if asked. Respondent characteristics associated with prior research participation included having greater socio-economic advantage (p = 0.027) and greater knowledge of discriminatory historical events/policies (p < 0.001). In contrast, the only respondent characteristic associated with willingness to donate human milk to research was younger age (p = 0.002). Conclusion: Our findings suggest that Black pregnant and postpartum people are interested in biomedical research, specifically human milk and lactation research. However, greater intentionality and targeted recruitment of this underrepresented population is needed to increase diversity among human milk and lactation study samples. Structural and community-based interventions, informed by community members, are needed to address concerns and improve participant engagement.

What Is "Key Information"? Consideration of the Reasons People Do or Do Not Take Part in Research.

We performed a qualitative review of 50 consent forms posted on Clinicaltrials.gov, examining the content of key information sections. We found that key information disclosures are typically focused on procedures, risks, potential benefits, and alternatives. Drawing upon reviews of the large literature examining the reasons people do or do not take part in research, we propose that these disclosures should be based more directly on what we know to be the real reasons why people choose to take part or refuse participation. We propose key information language for consideration by researchers and institutional review boards.

Attitudes and Perceptions about Brain Donation Among African Americans: Implications for Recruitment into Alzheimer's Disease Research.

The objective of this study was to investigate attitudes toward brain donation and perceptions of medical research that influence brain donation among African Americans. Cross-sectional surveys were administered to African American community members (n = 227). Findings indicate that only 27% of respondents were willing to donate their brain. As medical mistrust was not found to be a significant barrier to research participation, there may be opportunity to increase brain donation by providing information about Alzheimer's disease and brain donation to potential donors and their families so that informed decisions about participating in research can be made.

Understanding facilitators of research participation among adults with self-reported chronic pain - a survey examining hypothetical research participation.

BACKGROUND: An inability to successfully recruit participants into clinical research has consequences that negatively affect the conduct and reliability of research studies. Understanding facilitators of research participation, namely motives for participation and preferred research outcomes, may improve recruitment and retention of clinical trials related to chronic pain. The present study explored research participation facilitators among individuals with chronic pain and their association with demographic characteristics, pain-related characteristics, and factors related to future research engagement. METHODS: Individuals from Michigan who were 18 years or older and self-reported having chronic pain completed an online survey assessing motives for research participation and desired research outcomes. Analyses were conducted in three stages. First, we evaluated underlying factors of motives for participation and research outcome preferences using principal components analysis. Second, we classified individuals according to their patterns of facilitators using latent profile analysis. Finally, we evaluated differences between facilitator profiles in demographic characteristics, pain-related characteristics, and factors related to future research engagement using χ2 analyses and Kruskal-Wallis rank sum tests. RESULTS: Three components of motives for research participation were identified: social engagement/enjoyment; pain improvement/advancing science; and compensation. Three components of research outcome preferences were identified: co-occurring symptom reduction; behavior reduction modification; and pain and function improvement. Four potential patient-centered profiles utilizing these dimensions of facilitators were identified that had unique demographic characteristics, research participation willingness, and treatment interest. CONCLUSIONS: Our data provide a framework of motives and research outcome preferences that may inform recruitment and retention in chronic pain research. It also gives an indication of who may respond best to active or passive recruitment strategies that appeal to a given motive or preferred outcome. This information may be useful for improving recruitment and to monitor any potential biases in participant samples.

"My Blood, You Know, My Biology Being out There ": Consent and Participant Control of Biological Samples.

The widespread and persistent underrepresentation of groups experiencing health disparities in research involving biospecimens is a barrier to scientific knowledge and advances in health equity. To ensure that all groups have the opportunity to participate in research and feel welcome and safe doing so, we must understand how research studies may be shaped to promote inclusion. In this study, we explored the decision to participate in hypothetical research scenarios among African American adults (n = 169) that varied on the basis of four attributes (form of consent, reason for research, institutional affiliation and race of the researcher). Findings indicate that participants were largely willing to contribute to biobanks but significantly preferred opportunities where they had control over the use of their biological samples through tiered or study-specific forms of consent. Broad consent procedures, although common and perhaps preferred by participants with high trust in researchers, may amount to an exclusionary practice.

Motivation to participate and attrition factors in a COVID-19 biobank: A qualitative study.

BACKGROUND: The Biobanque québécoise de la COVID-19 (Quebec Biobank for COVID-19, or BQC19) is a provincial initiative that aims to manage the longitudinal collection, storage, and sharing of biological samples and clinical data related to COVID-19. During the study, BQC19 investigators reported a high loss-to-follow-up rate. The current study aimed to explore motivational and attrition factors from the perspective of BQC19 participants and health care and research professionals. METHODS: This was an inductive exploratory qualitative study. Using a theoretical sampling approach, a sample of BQC19 participants and professionals were invited to participate via semi-structured interviews. Topics included motivations to participate; participants' fears, doubts, and barriers to participation; and professionals' experiences with biobanking during the COVID-19 pandemic. RESULTS: Interviews were conducted with BQC19 participants (n = 23) and professionals (n = 17) from 8 clinical data collection sites. Motivations included the contribution to science and society in crisis, self-worth, and interactions with medical professionals. Reasons for attrition included logistical barriers, negative attitudes about public health measures or genomic studies, fear of clinical settings, and a desire to move on from COVID-19. Motivations and barriers seemed to evolve over time and with COVID-19 trends and surges. Certain situations were associated with attrition, such as when patients experienced indirect verbal consent during hospitalization. Barriers related to human and material resources and containment/prevention measures limited the ability of research teams to recruit and retain participants, especially in the ever-evolving context of crisis. CONCLUSION: The pandemic setting impacted participation and attrition, either by influencing participants' motivations and barriers or by affecting research teams' ability to recruit and retain participants. Longitudinal and/or biobanking studies in a public health crisis setting should consider these factors to limit attrition.