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The relative effectiveness of altruistic and egocentric persuasion messages is an important research question when voluntary participation in medical research is the target behavior. In the US, most participants in Alzheimer’s disease-focused research registries are White females, so increasing diversity in registry membership is a public health priority. We compared the association of two belief-based motivations – egocentric and altruistic – with intention to enroll in an Alzheimer’s research registry using a nationally representative theory-based survey of US adults 50 years of age or older while oversampling Black and Hispanic respondents. With the exception of Hispanic females, there were few respondent differences between individual motivational belief items and the correlations between the altruistic and egocentric indices were similar with independent effects on intention: the effects of the two motivations on intention were not redundant. Further analysis demonstrated that a moderation model was not superior to an additive model when both altruistic and egocentric indices simultaneously predicted intention. Registry recruitment messages should use both altruistic and egocentric persuasive message components to increase enrollment into Alzheimer’s research registries. Similar studies should determine if the additive effects of altruistic and egocentric motivations apply to other voluntary research participation contexts such as chronic diseases and mental illness. [ABSTRACT FROM AUTHOR]

Background: Ring-based studies are a novel research design commonly used for research involving infectious diseases: contacts of newly infected individuals form a ring that is targeted for interventions (e.g., vaccine, post-exposure prophylaxis). Given the novelty of the research design, it is critical to obtain feedback from participants on their experiences with ring-based studies to help with the development of future trials. Methods: In 2021, we conducted 26 semi-structured interviews with adult participants of a COVID-19 ring-based post-exposure prophylaxis trial based in Canada. We applied a purposive sampling approach and electronically recruited participants who tested positive for COVID-19 (Index Cases) and either agreed or declined for the study team to contact their potentially exposed contacts. We also included individuals who participated in the trial after being potentially exposed to an Index Case (known as Ring Members), and those who declined to participate after potential exposure. The methodological design of semi-structured interviews allowed participants to share their opinions and experiences in the trial (e.g., elements they enjoyed and disliked regarding their participation in the study). Results: The majority of participants in our study were women (62%) and the average age was 37.3 years (SD = 13.2). Overall, participants reported being highly satisfied with partaking in the ring-based trial. Notably, no substantial complaints were voiced about the trial's design involving contact after exposure. The most common reason of satisfaction was the knowledge of potentially helping others by advancing knowledge for a greater cause (e.g., development of potential treatment to prevent SARS-CoV-2 infection). Other reasons were curiosity about participating in a trial, and an activity to fill free time during the pandemic. A central element of dislike was confusion about instructions with the trial (e.g., independent at home SARS-CoV-2 testing). Additionally, maintaining confidentiality was a crucial concern for participants, who sought assurance that their data would not be shared beyond the scope of the study. Conclusions: Our results have the potential to inform future research, including clinical trials such as ring-based studies, by incorporating insights from participants' experiences into the development of study protocols. Despite some protocol-related challenges, participants expressed high satisfaction, driven by the desire to advance science and potentially aid others. [ABSTRACT FROM AUTHOR]

Background: Recruitment rates to rehabilitation trials are variable among cancer survivors, and deeper investigation into the causes for declining participation is needed. The aim of this study was to qualitatively explore the experiences of people with myeloma referred for autologous stem cell transplant who were approached to take part in a physiotherapist-led exercise trial but declined. Methods: Participants were asked to participate in this qualitative study after declining to participate in a trial conducted at a UK tertiary cancer center. Semi-structured interviews were conducted. Data was analyzed inductively using reflexive thematic analysis. Results: Interviews from 18 myeloma patients (56% male, mean age 62 years) were analyzed. Four themes were identified: 1) Traveling to the specialist center is challenging, not just logistically; 2) Individualized approach valued but recall of research information variable; 3) Being less active has profound impact yet ameliorative support is lacking; and 4) Common side-effects of treatment are expected and endured but personal impact underestimated and unaddressed. Conclusion: A number of barriers to participation were identified. Travel, a commonly cited reason for declining research participation, is more than a logistical issue for cancer survivors experiencing side-effects and the time burden of clinical appointments. Expectation or knowledge of the typical side-effects from myeloma and its treatment may lead to under-reporting of concerns to care providers, despite their impact upon daily activities and quality of life. Approaches used for research recruitment should consider the timing and consequences of ongoing cancer treatment to reduce potential barriers to participation. [ABSTRACT FROM AUTHOR]

Abstract Background Ring-based studies are a novel research design commonly used for research involving infectious diseases: contacts of newly infected individuals form a ring that is targeted for interventions (e.g., vaccine, post-exposure prophylaxis). Given the novelty of the research design, it is critical to obtain feedback from participants on their experiences with ring-based studies to help with the development of future trials. Methods In 2021, we conducted 26 semi-structured interviews with adult participants of a COVID-19 ring-based post-exposure prophylaxis trial based in Canada. We applied a purposive sampling approach and electronically recruited participants who tested positive for COVID-19 (Index Cases) and either agreed or declined for the study team to contact their potentially exposed contacts. We also included individuals who participated in the trial after being potentially exposed to an Index Case (known as Ring Members), and those who declined to participate after potential exposure. The methodological design of semi-structured interviews allowed participants to share their opinions and experiences in the trial (e.g., elements they enjoyed and disliked regarding their participation in the study). Results The majority of participants in our study were women (62%) and the average age was 37.3 years (SD = 13.2). Overall, participants reported being highly satisfied with partaking in the ring-based trial. Notably, no substantial complaints were voiced about the trial’s design involving contact after exposure. The most common reason of satisfaction was the knowledge of potentially helping others by advancing knowledge for a greater cause (e.g., development of potential treatment to prevent SARS-CoV-2 infection). Other reasons were curiosity about participating in a trial, and an activity to fill free time during the pandemic. A central element of dislike was confusion about instructions with the trial (e.g., independent at home SARS-CoV-2 testing). Additionally, maintaining confidentiality was a crucial concern for participants, who sought assurance that their data would not be shared beyond the scope of the study. Conclusions Our results have the potential to inform future research, including clinical trials such as ring-based studies, by incorporating insights from participants’ experiences into the development of study protocols. Despite some protocol-related challenges, participants expressed high satisfaction, driven by the desire to advance science and potentially aid others.

Abstract 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.

Research conducted on homogenous populations can lead to biased and misleading findings, impeding the development of effective interventions and treatments for diverse populations. Low participation among minority groups further leads to disparities in access to innovative cancer care and treatment outcomes associated with trial participation. To better understand cancer patients’ attitudes and willingness to participate in clinical trials, solid tumor patients attending their clinic visits were invited to complete a survey. The survey included questions on demographics, previous trial participation, and future trial interest. Responses were analyzed with frequency tables and chi-square tests. Of 300 participants, only 96 (32%) were asked to participate in a clinical trial. Of these, 81 (84%) chose to participate and 15 (16%) did not. There were notable differences by race but not gender or education level. Of the 204 who had never been asked to participate, 70% indicated that they would be willing to participate in future, and there was a strong sex–race interaction. Non-White males were the most hesitant group. Of 204, 99% indicated that they would participate to access new treatments, and 57% would participate to contribute to research overall. This study shows that many solid tumor patients undergoing treatment are not offered clinical trials. Racial differences in attitudes toward trial participation are evident. Nonetheless, many patients are willing to participate in trials to access innovative treatments and to support research. Culturally relevant outreach to build trust with minority groups is needed to increase overall participation in clinical trials.

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. [ABSTRACT FROM AUTHOR]

Research conducted on homogenous populations can lead to biased and misleading findings, impeding the development of effective interventions and treatments for diverse populations. Low participation among minority groups further leads to disparities in access to innovative cancer care and treatment outcomes associated with trial participation. To better understand cancer patients' attitudes and willingness to participate in clinical trials, solid tumor patients attending their clinic visits were invited to complete a survey. The survey included questions on demographics, previous trial participation, and future trial interest. Responses were analyzed with frequency tables and chi-square tests. Of 300 participants, only 96 (32%) were asked to participate in a clinical trial. Of these, 81 (84%) chose to participate and 15 (16%) did not. There were notable differences by race but not gender or education level. Of the 204 who had never been asked to participate, 70% indicated that they would be willing to participate in future, and there was a strong sex–race interaction. Non-White males were the most hesitant group. Of 204, 99% indicated that they would participate to access new treatments, and 57% would participate to contribute to research overall. This study shows that many solid tumor patients undergoing treatment are not offered clinical trials. Racial differences in attitudes toward trial participation are evident. Nonetheless, many patients are willing to participate in trials to access innovative treatments and to support research. Culturally relevant outreach to build trust with minority groups is needed to increase overall participation in clinical trials. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background/Aims: Older adults living in care homes are underrepresented in research, resulting in a poorer evidence base for their care. Increasing opportunities and ability for care home residents to be included in research is urgently needed. This survey explored the views and experiences of relevant stakeholders in the UK about opportunities for residents to participate in research, decisions about participation, and the barriers and facilitators to their involvement. Methods: The survey was conducted from September to December 2022 using an online survey tool or paper-based format. Participants were recruited via multiple routes, including social media and contact with care homes. Quantitative data were analysed using descriptive statistics and free-text responses were analysed using content analysis. Results: A total of 80 participants responded to the survey, of which 46 were suitable for analysis from care home residents (n=6), relatives (n=11), care home staff (n=14), other health and social care professionals who work with care homes (n=7), and researchers (n=8). The main barriers identified were the discordance between stakeholders' awareness of research opportunities and difficulties with residents' communication needs. Facilitators included effective communication between stakeholders, positive staff engagement and researchers' flexibility. Conclusions: There are a number of barriers to the inclusion of care home residents in research. There is a need to develop strategies to improve communication and relationships between stakeholders, as well as training programmes to educate stakeholders about care home-based research and its benefits. Implications for practice: These findings can support the development of strategies to improve communication and relationships between stakeholders, training programmes to educate stakeholders about care home research and its benefits, and targeted interventions to improve research inclusion for UK care home residents. [ABSTRACT FROM AUTHOR]

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.

Underrepresentation of socioeconomically, culturally, and/or linguistically diverse (SCLD) children with neurodevelopmental disorders (NDD) and their families has become a focal point for researchers. This systematic review aimed to identify researchers' strategies for recruiting and retaining SCLD families of children with NDD, published between 1993 and 2018. One hundred twenty-six articles were included, and study samples were categorized as "High SCLD" and "Low SCLD". Chi-square tests of independence were used to determine associations between sample composition (i.e., High/Low SCLD sample) and study characteristics reported. Significant associations were found between sample composition and studies that explicitly stated intention to recruit SCLD families, χ2(1) = 12.70, p <.001, Phi = 0.38 (moderate); and for studies that reported the following participant characteristics: language, χ2(1) = 29.58, p <.001, Phi = 0.48 (moderate-to-large); and race/ethnicity + SES + language, χ2(1) = 19.26, p <. 001, Phi = 0.39 (moderate). However, associations were not found between recruitment and retention approaches and whether studies included High SCLD or Low SCLD samples. Further study of NDD researchers' recruitment and retention approaches that successfully include SCLD families is needed. [ABSTRACT FROM AUTHOR]

Some researchers express caution about investigating potentially challenging topics in research, including trauma, non-suicidal self-injury (NSSI), and dissociation. While there have been studies that demonstrate people typically find participating in trauma- and NSSI-related research as more positive than negative, there have been no studies investigating how highly dissociative people react to trauma-, NSSI-, and dissociation-related research. Participants (n = 229) who self-reported dissociative symptoms and/or dissociative diagnoses completed an online survey about trauma, dissociation, and NSSI, followed by a quantitative questionnaire about their reactions to participation. Participants who endorsed unexpected emotional reactions were asked to explain their reactions and offer suggestions for improvement in a free-text qualitative question. Participants indicated the benefits of participating in the study outweighed the costs. Dissociation predicted emotional reactions but not other types of reactions (e.g. perceived drawbacks, personal benefits, global evaluation, and participation). However, when controlling for trauma history and NSSI, only trauma history predicted emotional reactions. Using codebook thematic analysis with the qualitative data, the following themes were developed to describe participants' unexpected emotional reactions and suggestions for improvement: (1) Trauma-Related Reactions (69.91%), (2) Neutral-Positive Feedback About the Study (39.82%), (3) Insight (24.78%), (4) Logistical Research Design Considerations (23.01%), and (5) Incongruence between Research Design and Lived Experience (11.50%). Research about trauma, dissociation, and NSSI was evaluated as more positive than negative and seemed to pose minimal risk to participants. It is important for researchers to not avoid studying these challenging topics yet strive to make their study design a safer and more validating experience for participants. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Longitudinal cohort studies are important for understanding the social and health trajectories of people who inject drugs. Little research exists, however, about the motivations, challenges, and experiences of participation in these studies. To address this gap, we conducted in-depth interviews with participants of an open-ended natural history longitudinal cohort study (SuperMIX) and with fieldworkers who collect the data for this study. Interviews were audio-recorded, and data analyzed thematically. Research findings revealed several motivating factors that encouraged participants to get involved in and stay in the study including financial reimbursement and the opportunity to contribute to a study aiming to improve the lives of peers. Many participants discussed their appreciation of the kindness and respect they were afforded by fieldworkers, and the advocacy role fieldworkers had undertaken with them. While some participants described challenges responding to some questions, there were also expressions of finding the experience therapeutic. Findings provide learnings for future studies and highlight how participation in longitudinal cohort research can provide an opportunity for on-going engagement that affords participants not only a chance to share their experiences, but to contribute to knowledge production and achieve clarity about their own experience. [ABSTRACT FROM AUTHOR]

Over the last decade, the return of results (ROR) in precision medicine research (PMR) has become increasingly routine. Calls for individual rights to research results have extended the "duty to report" from clinically useful genetic information to traits and ancestry results. ROR has thus been reframed as inherently beneficial to research participants, without a needed focus on who benefits and how. This paper addresses this gap, particularly in the context of PMR aimed at increasing participant diversity, by providing investigator and researcher perspectives on and questions about the assumed value of ROR in PMR. Semi-structured interviews with a purposive sample of investigators and researchers across federally funded PMR studies in three national consortia, as well as observations of study activities, focused on how PM researchers conceptualize diversity and implement inclusive practices across research stages, including navigating ROR. Interviewees (1) validated the value of ROR as a benefit of PMR, while others (2) questioned the benefit of clinically actionable results to individuals in the absence of sufficient resources for translating findings into health care for diverse and disadvantaged populations; (3) expressed uncertainties in applying the presumed value of ROR as a benefit for non-clinical results; and (4) and debated when the promise of the value of ROR may undermine trust in PMR, and divert efforts to return value beyond ROR. Conceptualizations of diversity and inclusion among PM researchers and investigators raise unique ethical questions where unexamined assumptions of the value of ROR inform study recruitment efforts to enroll minoritized and under-represented populations. A lack of consideration for resources and infrastructure necessary to translate ROR into actionable information may hinder trustworthy community-research relationships. Thus, we argue for a more intentional interrogation of ROR practices as an offer of benefit and for whom. [ABSTRACT FROM AUTHOR]

Purpose: This report describes a cancer survivor cohort from a community engagement program and compares characteristics and willingness to participate in health research between the cancer survivors and non-cancer community members.Methods: Among 11,857 members enrolled in HealthStreet at the University of Florida (10/2011-03/2020), 991 cancer survivors were identified and 1:1 matched to control members without cancer on sex, age, and zip code. Demographics, body weight, height, social determinants of health, history of cancer, and willingness to participate in research were recorded by Community Health Workers as a part of the baseline Health Needs Assessment.Results: Among the cancer survivors, 71.6% were female and 19.2% lived in rural areas with a mean age of 56.7 years in females and 60.8 years in males. At baseline, 44.7% received a cancer diagnosis within 5 years, while 15.8%, more than 20 years. Cancer survivors (vs. matched non-cancer controls) were less likely to be Black (31.1% vs. 63.6%) but more likely to be divorced, separated, or widowed (49.5% vs. 41.2%), be normal/underweight (34.0% vs. 25.6%) and have health insurance (80.0% vs. 68.6%; all p < 0.05). Cancer survivors versus matched controls reported higher rates of ever being in a health research study (32.4% vs. 24.9%) and interest in participating in studies ranging from minimal risk to greater-than-minimal risk.Conclusions: Cancer survivors from this community engagement program agnostic to cancer types and treatment are diverse in geography, race, and social determinants of health and can be a valuable resource for observational, interventional, and biospecimen research in cancer survivorship. [ABSTRACT FROM AUTHOR]

IntroductionCommunity 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.MethodsTo 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.ResultsMotivations 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.DiscussionBased 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.

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 collegeeducation (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 thatwork is needed to achieve a healthcare system that provides confidence to historically disadvantaged groups that their participation in research will benefit their community.

Little is known about how payment affects individuals' decisions to participate in HIV research. Using data from a U.S. survey of people living with HIV (N = 292), we examined potential research participants' attitudes toward payment, perceived study risk based on payment amount, and preferred payment forms, and how these factors vary by sociodemographic characteristics. Most respondents agreed people should be paid for HIV research participation (96%) and said payment would shape their research participation decisions (80%). Men, less formally educated individuals, and members of some minoritized racial-ethnic groups were less likely to be willing to participate in research without payment. Higher payment was associated with higher perceived study risks, while preferences for form of payment varied by age, gender, education, race-ethnicity, and census region of residence. Findings suggest payment may influence prospective research participants' risk-benefit calculus and participation, and that a one-size-fits-all approach to payment could differentially influence participation among distinct sociodemographic groups.

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.

Abstract 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.

Researchers are increasingly relying on online methods for data collection, including for qualitative research involving interviews and focus groups. In this letter, we alert autism researchers to a possible threat to data integrity in such studies: "scammer" participants, who may be posing as autistic people and/or parents of autistic children in research studies, presumably for financial gain. Here, we caution qualitative autism researchers to be vigilant of potential scammer participants in their online studies and invite a broader discussion about the implications of such fraudulent acts. Doing research online, via Zoom, Teams, or live chat, is becoming more and more common. It can help researchers to reach more people, including from different parts of the world. It can also make the research more accessible for participants, especially those with different communication preferences. However, online research can have its downsides too. We have recently been involved in three studies in which we had in-depth discussions with autistic people and/or parents of autistic children about various topics. It turns out, though, that some of these participants were not genuine. Instead, we believe they were "scammer participants": people posing as autistic people or parents of autistic children, possibly to gain money from doing the research. This is a real problem because we need research data that we can trust. In this letter, we encourage autism researchers to be wary of scammer participants in their own research. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This paper aims to gain a better understanding of co-creative research key principles and their enactment in real-life practices. The study is based on interviews and a focus group with academic researchers and professionals (n = 16) involved in eight co-creative research projects funded by the Brussels Regional Institute for Research and Innovation (Innoviris). The study demonstrates the tension between respondents’ understanding of the key principles of co-creative research (e.g. a transformative aim, considering the community as actors, shared ownership, valuing experiential knowledge) and the power issues they face related to a ‘project-funding’ and ‘academic research’ logic when enacting those principles in real-life practices. This paper concludes that although dealing with power relations is inherent in co-creative research, power imbalances should be questioned on the level of (1) the linear, limited and inflexible nature of ‘project-funding’ logics and (2) the exclusive character of research methods, settings and institutions in ‘academic research’ logics. Finally, introducing a political and emancipatory dimension in co-creative research can contribute to reducing the gap between principles and their enactment in real-life practices. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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BackgroundConcerns exist regarding biomedical research participation in marginalized and historically disadvantaged communities.ObjectivesThe purpose of this study was to understand critical barriers to participation in human milk research from the perspective of Black pregnant and postpartum people.MethodsA 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.ResultsMost (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

IntroductionEngaging diverse participants is vital to precision medicine (PM) but has been limited by low knowledge and concerns about various issues related to PM research. News media is an important channel of information that can shape public understanding and perception of PM. However, how PM is represented in news media has not been sufficiently understood.MethodsThe study used quantitative content analysis to evaluate the portrayal of PM in US print news media between 2015 and 2021 (N = 198). Three domains of factors related to PM portrayed in news articles were coded: (1) characteristics of PM, (2) target diseases of PM and their related characteristics, and (3) non-scientific news frames.ResultsThere was considerable news coverage of the treatment benefits of PM, especially for cancer. Potential risks or concerns, non-cancer diseases, and non-treatment issues that could be important to diverse populations were less covered. News articles frequently cited scientists, patients, and government officials with different focuses on PM.DiscussionThe study highlighted the need for accurate and complete information about PM in news media for diverse participants. News media should actively explore social, ethical, and legal issues to support the engagement of diverse populations.

Abstract Background The National Institutes of Health has advocated for improved minority participation in clinical research, including clinical trials and observational epidemiologic studies since 1993. An understanding of Mexican Americans (MAs) participation in clinical research is important for tailoring recruitment strategies and enrollment techniques for MAs. However, contemporary data on MA participation in observational clinical stroke studies are rare. We examined differences between Mexican Americans (MAs) and non-Hispanic whites (NHWs) participation in a population-based stroke study. Methods We included 3,594 first ever stroke patients (57.7% MAs, 48.7% women, median [IQR] age 68 [58–79]) from the Brain Attack Surveillance in Corpus Christi Project, 2009–2020 in Texas, USA, who were approached and invited to participate in a structured baseline interview. We defined participation as completing a baseline interview by patient or proxy. We used log-binomial models adjusting for prespecified potential confounders to estimate prevalence ratios (PR) of participation comparing MAs with NHWs. We tested interactions of ethnicity with age or sex to examine potential effect modification in the ethnic differences in participation. We also included an interaction between year and ethnicity to examine ethnic-specific temporal trends in participation. Results Baseline participation was 77.0% in MAs and 64.2% in NHWs (Prevalence Ratio [PR] 1.20; 95% CI, 1.14–1.25). The ethnic difference remained after multivariable adjustment (1.17; 1.12–1.23), with no evidence of significant effect modification by age or sex (P interaction by age = 0.68, P interaction by sex = 0.83). Participation increased over time for both ethnic groups (P trend

Abstract Background People with amyotrophic lateral sclerosis (ALS) face disability- and travel-related barriers to research participation. We investigate the usefulness and acceptability of asynchronous, online focus groups (AOFGs) for research involving people affected by ALS (patients and family caregivers) and outline lessons learned. Methods The ALS Talk Project, consisting of seven AOFGs and 100 participants affected by ALS, provided context for this investigation. Hosted on the secure itracks Board™ platform, participants interacted in a threaded web forum structure. Moderators posted weekly discussion questions and facilitated discussion. Data pertaining to methodology, participant interaction and experience, and moderator technique were analyzed using itracks and NVivo 12 analytics (quantitative) and conventional content analysis and the constant-comparative approach (qualitative). Results There was active engagement within groups, with post lengths averaging 111.48 words and a complex network of branching interactions between participants. One third of participant responses included individual reflections without further interaction. Participants affirmed their co-group members, offered practical advice, and discussed shared and differing perspectives. Moderators responded to all posts, indicating presence and probing answers. AOFGs facilitated qualitative and quantitative data-gathering and flexible response to unanticipated events. Although total participation fell below 50% after 10–12 weeks, participants valued interacting with peers in an inclusive, confidential forum. Participants used a variety of personal devices, browsers, and operating systems when interacting on the online platform. Conclusions This methodological examination of AOFGs for patient-centred investigations involving people affected by ALS demonstrates their usefulness and acceptability, and advances knowledge of online research methodologies. Lessons learned include: early identification of research goals and participant needs is critical to selecting an AOFG platform; although duration longer than 10–12 weeks may be burdensome in this population, participants were positive about AOFGs; AOFGs offer real world flexibility enabling response to research challenges and opportunities; and, AOGFs can effectively foster safe spaces for sharing personal perspectives and discussing sensitive topics. With moderators playing an important role in fostering engagement, AOFGs facilitated rich data gathering and promoted reciprocity by fostering the exchange of ideas and interaction between peers. Findings may have implications for research involving other neurologically impaired and/or medically vulnerable populations.

This study evaluated stakeholders' perspectives regarding participation in two hypothetical neuromodulation trials focused on individuals with Alzheimer's disease and related disorders (ADRDs). Stakeholders (i.e., individuals at risk for ADRDs [n = 56], individuals with experience as a caregiver for someone with a cognitive disorder [n = 60], and comparison respondents [n = 124]) were recruited via MTurk. Primary outcomes were willingness to enroll (or enroll one's loved one), feeling lucky to have the opportunity to enroll, and feeling obligated to enroll in two protocols (transcranial magnetic stimulation, TMS; deep brain stimulation, DBS). Relative to the Comparison group, the At Risk group endorsed higher levels of "feeling lucky" regarding both research protocols, and higher willingness to participate in the TMS protocol. These findings provide tentative reassurance regarding the nature of decision making regarding neurotechnology-based research on ADRDs. Further work is needed to evaluate the full range of potential influences on research participation.

Abstract Background Anticipatory planning in the UK focuses on supporting people who anticipate periods of impaired capacity to express their wishes about future care through processes such as advance care planning. Other countries have extended anticipatory planning to include processes for people to prospectively express their preferences about research participation. Advance research planning (ARP) is thought to extend autonomy and ensure that ‘proxy’ decisions about research are based on their wishes and preferences. Methods A cross-sectional survey was conducted with two stakeholder groups (members of the public including people living with capacity-affecting conditions and family members; researchers and other professionals) who were recruited via research registries and other routes. Online questionnaires were used to capture the perspectives of the two groups. Responses were analysed using descriptive statistics and content analysis. Results A total of 327 participants (members of the public n = 277, professionals n = 50) completed the survey (November 2022 - March 2023). ARP was supported by 97% of public contributors and 94% of professionals. Participants thought that ARP should include the person’s general wishes about research, specific types of studies, and who should make decisions on their behalf. They identified a number of challenges, including how ARP could take account of changes in individuals’ preferences or circumstances whilst protecting their rights and interests. Implementation barriers included the potential time, complexity, and cost involved. These could be addressed by embedding ARP in existing anticipatory planning pathways and aligning it with other research enrolment activities. Relationships and trust played a key role, including underpinning who should support the delivery of ARP, how they are trained, and when it is undertaken. Conclusions There were high levels of support for introducing ARP in the UK. Further research should explore practical barriers and stakeholder concerns and identify any unintended consequences. Future activities should include developing ARP interventions alongside training and other resources, and also focus on public awareness campaigns, and engaging policymakers and other stakeholders.

Abstract 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.

Abstract Introduction: Latinx populations are underrepresented in clinical research. Asking Latinx research participants about their research experiences, barriers, and facilitators could help to improve research participation for these populations. Methods: The Salud Estres y Resilencia (SER) Hispano cohort study is a longitudinal cohort study of young adult Latinx immigrants whose design and conduct were tailored for their study population. We administered the Research Participant Perception Survey (RPPS) to SER Hispano participants to assess their experiences in the study. We describe overall results from the RPPS and compare results of surveys administered to SER Hispano participants via email versus telephone. Results: Of 340 participants who were contacted with the RPPS, 142 (42%) responded. Among respondents, 53 (37%) responded by initial email contact; and 89 (63%) responded by subsequent phone contact. The majority of respondents were between 35 and 44 years of age (54%), female (76%), and of Cuban origin (50%). Overall, research participants expressed high satisfaction with their research experience; 84% stated that they would “definitely” recommend research participation to friends and family, with no significant difference by method of survey administration (P = 0.45). The most common factor that was chosen that would influence future research participation was having summary results of the research shared with them (72%). Conclusion: We found that culturally tailored studies can be good experiences for Latinx research participants; and we found that use of the RPPS can be administered successfully, particularly when administered by more than one method, including telephone, to evaluate and to improve research experiences for this population.

The existing ethico‐legal regulation of adolescent children's participation in health research in South Africa is currently unclear. The article interrogates the existing framework governing children's consent to research participation, with specific emphasis on discrepancies in consent norms in law and ethical guidelines. Against the backdrop of the constitutional directive that requires that a child's best interests are of paramount importance in every matter concerning the child, the article assesses whether sufficient consideration is given to children's evolving maturity and capacities when consent to their participation in health research is sought. The article provides specific recommendations and proposes a legislative change to consent provisions in the National Health Act 61 of 2003 in order to address the existing lacunae and to align the framework with constitutional imperatives and international fundamental rights considerations. [ABSTRACT FROM AUTHOR]

This paper offers a critical look at the promises and drawbacks of a popular, novel data collection technique—online tracking—from the point of view of sample composition. Using data from two large-scale studies about political attitudes and information consumption behavior carried out in Germany and Switzerland, we find that the likelihood of participation in a tracking study at several critical dropout points is systematically related to the gender, age, and education of participants, with men, young, and more educated participants being less likely to dropout of the studies. Our findings also show that these patterns are incremental, as changes in sample composition accumulate over successive study stages. Political interest and ideology were also significantly related to the likelihood of participation in tracking research. The study explores some of the most common concerns associated with tracking research leading to non-participation, finding that they also differ across demographic groups. The implications of these findings are discussed. [ABSTRACT FROM AUTHOR]

Background: People with amyotrophic lateral sclerosis (ALS) face disability- and travel-related barriers to research participation. We investigate the usefulness and acceptability of asynchronous, online focus groups (AOFGs) for research involving people affected by ALS (patients and family caregivers) and outline lessons learned. Methods: The ALS Talk Project, consisting of seven AOFGs and 100 participants affected by ALS, provided context for this investigation. Hosted on the secure itracks Board™ platform, participants interacted in a threaded web forum structure. Moderators posted weekly discussion questions and facilitated discussion. Data pertaining to methodology, participant interaction and experience, and moderator technique were analyzed using itracks and NVivo 12 analytics (quantitative) and conventional content analysis and the constant-comparative approach (qualitative). Results: There was active engagement within groups, with post lengths averaging 111.48 words and a complex network of branching interactions between participants. One third of participant responses included individual reflections without further interaction. Participants affirmed their co-group members, offered practical advice, and discussed shared and differing perspectives. Moderators responded to all posts, indicating presence and probing answers. AOFGs facilitated qualitative and quantitative data-gathering and flexible response to unanticipated events. Although total participation fell below 50% after 10–12 weeks, participants valued interacting with peers in an inclusive, confidential forum. Participants used a variety of personal devices, browsers, and operating systems when interacting on the online platform. Conclusions: This methodological examination of AOFGs for patient-centred investigations involving people affected by ALS demonstrates their usefulness and acceptability, and advances knowledge of online research methodologies. Lessons learned include: early identification of research goals and participant needs is critical to selecting an AOFG platform; although duration longer than 10–12 weeks may be burdensome in this population, participants were positive about AOFGs; AOFGs offer real world flexibility enabling response to research challenges and opportunities; and, AOGFs can effectively foster safe spaces for sharing personal perspectives and discussing sensitive topics. With moderators playing an important role in fostering engagement, AOFGs facilitated rich data gathering and promoted reciprocity by fostering the exchange of ideas and interaction between peers. Findings may have implications for research involving other neurologically impaired and/or medically vulnerable populations. [ABSTRACT FROM AUTHOR]

Background: Despite the threat of self‐selection bias to the generalizability of research findings, remarkably little is known about who chooses to take part in non‐suicidal self‐injury (NSSI) research specifically. We aimed to establish the extent of willingness to take part in NSSI research within a commonly sampled population before assessing whether individual differences in demographic characteristics, NSSI lived experience, and participation experiences were associated with willingness to take part in future NSSI research. Methods: New Zealand university students (n = 3098) completed self‐report measures of their NSSI, psychological distress, emotional dysregulation, experience of their participation in the current study, and willingness to participate in future NSSI research. Results: Most participants (78.2%) indicated that they were willing to take part in future NSSI research. Men, older participants, people with NSSI lived experience, and those with more frequent past‐year NSSI were more likely to be willing to take part in future NSSI research. Participants who reported a more positive subjective experience of the current study also indicated greater willingness. Conclusions: Findings demonstrate systematic differences in who is willing to take part in NSSI research. Future research should implement methodological and statistical approaches to mitigate the impact of self‐selection bias on NSSI research. [ABSTRACT FROM AUTHOR]

In the wake of mandates for biomedical research to increase participation by members of historically underrepresented populations, community engagement (CE) has emerged as a key intervention to help achieve this goal. Using interviews, observations, and document analysis, we examine how stakeholders in precision medicine research understand and seek to put into practice ideas about who to engage, how engagement should be conducted, and what engagement is for. We find that ad hoc, opportunistic, and instrumental approaches to CE exacted significant consequences for the time and resources devoted to engagement and the ultimate impacts it has on research. Critical differences emerged when engagement and research decisionmaking were integrated with each other versus occurring in parallel, separate parts of the study organization, and whether community members had the ability to determine which issues would be brought to them for consideration or to revise or even veto proposals made upstream based on criteria that mattered to them. CE was understood to have a range of purposes, from instrumentally facilitating recruitment and data collection, to advancing community priorities and concerns, to furthering long-term investments in relationships with and changes in communities. These choices about who to engage, what engagement activities to support, how to solicit and integrate community input into the workflow of the study, and what CE was for were often conditioned upon preexisting perceptions and upstream decisions about study goals, competing priorities, and resource availability. Upstream choices about CE and constraints of time and resources cascade into tradeoffs that often culminated in "pantomime community engagement." This approach can create downstream costs when engagement is experienced as improvised and sporadic. Transformations are needed for CE to be seen as a necessary scientific investment and part of the scientific process. [ABSTRACT FROM AUTHOR]

Abstract Introduction The underrepresentation of Black, Indigenous, and People of Color (BIPOC) individuals in healthcare research limits generalizability and contributes to healthcare inequities. Existing barriers and attitudes toward research participation must be addressed to increase the representation of safety net and other underserved populations. Methods We conducted semi‐structured qualitative interviews with patients at an urban safety net hospital, focusing on facilitators, barriers, motivators, and preferences for research participation. We conducted direct content analysis guided by an implementation framework and used rapid analysis methods to generate final themes. Results We completed 38 interviews and identified six major themes related to preferences for engagement in research participation: (1) wide variation in research recruitment preferences; (2) logistical complexity negatively impacts willingness to participate; (3) risk contributes to hesitation toward research participation; (4) personal/community benefit, interest in study topic, and compensation serve as motivators for research participation; (5) continued participation despite reported shortcomings of informed consent process; and (6) mistrust could be overcome by relationship or credibility of information sources. Conclusion Despite barriers to participation in research studies among safety‐net populations, there are also facilitators that can be implemented to increase knowledge and comprehension, ease of participation, and willingness to join research studies. Study teams should vary recruitment and participation methods to ensure equal access to research opportunities. Patient/Public Contribution Our analysis methods and study progress were presented to individuals within the Boston Medical Center healthcare system. Through this process community engagement specialists, clinical experts, research directors, and others with significant experience working with safety‐net populations supported data interpretation and provided recommendations for action following the dissemination of data.

Abstract Background Energy citizenship has emerged as a concept which attempts to capture the new role envisaged for urban citizens as engaged and active in the energy transition. However, exactly how to successfully engage energy citizens requires more research and this article aims to contribute to this knowledge gap. The article presents a new methodology, ‘Walking with Energy’, which seeks to (re)connect citizens with where their energy is coming from. By experimenting with the application of this method in the UK and Sweden, we consider how viewing and talking about heating provision, while in the energy landscape, can encourage participants to reflect upon their local, mundane energy experiences and foster a greater sense of energy citizenship and greater motivation to engage with debates around heating transition. Results The article presents four different events: (1) a physical walk to an energy recovery facility, (2) a walk to view a building’s heat exchanger, (3) a round-table discussion using pictures to communicate in a language café, and (4) a virtual tour around an Energy Recovery Facility. The way we conducted the events influenced who engaged, for example: the walk through a heat facility and the walk to visit a heat exchanger in the basement of a University building tended to attract white middle-class people, while the virtual tour attracted a more mixed audience in terms of age and background, but most had a strong environmental interest. The language café targeted immigrants. The different events resulted in many similar reflections, but there was also variation. For example, the walk through the heat facility generated the most focused and least diverse reflections, while the event focussed on the heat exchanger opened up a wide range of issues for discussion. Conclusions We find that the method encouraged the sharing of personal experiences, storytelling, and deepened the engagement of participants with debates about energy. The method can help promote energy democracy and boost a deliberative dialogue about present and future energy systems among citizens. We also learnt that promotion of energy citizenship requires not only active citizens but also active facilitation to create opportunities for citizens to engage and reflect.