Abstract A33: Engaging Linguistically and Ethnically Diverse Low Income Women in Health Research

Background: Underserved breast cancer survivors are typically offered fewer opportunities to participate in cancer research. To address this disparity, a community based navigator program, Shanti's Margot Murphy Breast Cancer Program (Shanti) initiated a collaboration with UCSF researchers and BreastCancerTrials.org (BCT), a nonprofit clinical trials matching service to explore the potential role of a trusted community-based organization as a source of culturally appropriate education and access to clinical trial information. Through formative research, we developed the Health Research Engagement Intervention (HREI), a one-on-one navigator-client education session emphasizing the range of treatment and non-treatment quality-of-life and observational studies, conducted at a time when the participant is not in the initial crisis of diagnosis. The HREI ends by providing participants with an information card listing BCT and other organizations that provide information about health research for breast cancer patients and survivors. Methods: We tested the HREI in a randomized controlled trial, comparing the HREI to simply providing the information card. Pre and post intervention surveys one month apart measured our primary outcome of health research information-seeking behavior. Secondary outcomes include health research knowledge, attitudes towards research participation, and health empowerment. All Shanti clients who spoke English, Cantonese or Spanish and had “low care navigation needs” (either completed treatment or no longer in the crisis of initial diagnosis and/or burdened by treatment protocols) were eligible. Results: We recruited 133 Shanti Clients, including 59 who spoke English, 48 Cantonese, and 26 Spanish; 66 were randomized to the intervention arm and 67 to the control arm, and 130 completed both pre- and post-test surveys. Almost one-third of participants in both the intervention and control arms reported having talked to someone about health research or having called a telephone number or visited a website listed on the card (30% vs. 30%, p=0.94); a smaller proportion of participants confirmed that their information-seeking was related to the content of the educational materials (17% vs. 9%, p=0.22). On average the change from pre- to post-test in a 5-item knowledge score, adjusted for pre-test knowledge, was greater in the intervention group than in the control group (p=0.028), but the proportion of participants who were very confident that they could find health research information (had health empowerment) remained essentially unchanged in both study arms (intervention: 20% post vs. 21% pre, p=0.76; control: 25% post vs. 25% pre, p=1.00). Women were more likely to seek information if they had higher pre-test knowledge scores (odds ratio [OR]=3.5 per item, 95% confidence interval [CI] 1.5-8.4) or a greater increase in knowledge from pre- to post-test (OR=2.2 per item, 95% CI 1.1-4.7); there was no association between information-seeking and health empowerment (OR=0.6, 95% CI 0.2-2.5) or study arm (OR=1.6, 95% CI 0.5-4.9). Conclusion: The HREI had a positive impact on knowledge of health research but did not significantly affect health empowerment or health research information-seeking behavior. Citation Format: Joseph G, Nickell A, Cohen E, Burke NJ, Colen S, Lawlor K, Guerra C, Stewart SL. Engaging linguistically and ethnically diverse low income women in health research: A randomized controlled trial [abstract]. In: Proceedings of the 2017 San Antonio Breast Cancer Symposium; 2017 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2018;78(4 Suppl):Abstract nr P4-10-05.

Active participation in health research plays an integral role in the development and implementation of evidence-based health interventions and policies. To assess public willingness and determinants of participation in public health research. A cross-sectional survey targeting Saudi residents aged > 16 years from the 13 regions of Saudi Arabia, using computer-assisted telephone interviews. We assessed the sociodemographic of participants, participants' involvement in research, their acceptance to participate, barriers hindering their participation, and their willingness to be involved in future health research. Pearson's χ2 and logistic regression analyses were used to explore determinants. There were 2512 participants in this study. Three hundred and seventy one (14.8%) confirmed that they had been invited previously to participate in research studies and 271 (73%) accepted the invitation. The majority (92%, n = 2319) of participants were willing to participate in future research. Being a young adult, male, college-educated, and employed were the main factors associated with willingness to participate in health research. Those who had previous experience of participation in health research were 3 times more willing to participate in future health research compared with participants with no prior experience (P < 0.001). This study highlighted the key determinants of willingness to participate in health research. Most participants had never been invited to participate in health research, but the majority reported a positive attitude towards participation. With rapid health system development nationally and regionally, Saudi participation levels in health research still need improvement.

The recent Supreme Court decision (ie, Dobbs v. Jackson Women's Health Organization), revoking the constitutional right to abortion in the United States, has the potential to dramatically disrupt progress in women's health research. The typical safeguards to ensure confidentiality and privacy of research participants in studies that collect certain types of personal health information may not hold against criminal investigations surrounding suspected pregnancy terminations. There are additional risks to participants in digital health research studies involving the use of wearable devices capable of tracking physiological measures, such as body temperature and heart rate, as these have shown promise for tracking conception and could be used to identify pregnancy termination signatures. There are strategies researchers can use to protect the safety of participants in health research who could get pregnant, while also maintaining integrity of research methods. The objective of this viewpoint is to discuss potential strategies to protect research participants' privacy that include the minimization of nonessential sensitive personal health information and anonymization protocols in the event of miscarriage or termination of pregnancy. We invite others to join this discussion so as to not let the current political landscape impede progress in women's health and reproductive research, while also protecting research participants.

Why research sex differences and similarities?

Health research participation of racial and ethnic minorities is significantly lower than their counterparts, impeding the testing and development of evidence based clinical and public health interventions for these populations. The purpose of this study was to determine African-Americans' (AAs) perceptions about health research, past participation in health research, and willingness to participate in health research studies compared to White adults from a large socio-economically disadvantaged population. Community members ages 18years or older enrolled in HealthStreet, an innovative community engagement research program comprised the source of study population. A total of 7809 community members (58.6% females) participated in the study with 65.8% AAs and 34.2% Whites. AAs were statistically significantly less likely to have previously participated in a research study, be willing to volunteer for any type of health research study, or to trust research or researchers compared to Whites. AAs also desired significantly higher compensation amounts to participate compared with Whites adults. In logistic regression analysis, education, age, gender, visits to healthcare practitioners and facilities were statistically significant predictors for AAs participation in health research. Keeping in view the findings of our study, clinical and public health researchers and practitioners should use special recruitment and retention strategies to increase the participation of AAs in health research studies.

Internationally, the interest in involving patients and the public in designing and delivering health interventions and researching their effectiveness is increasing. Several systematic reviews of participation in health research have recently been completed, which note a number of challenges in documenting the impact of participation. Challenges include working across stakeholders with different understandings of participation and levels of experience in reviewing; comparing heterogeneous populations and contexts; configuring findings from often thin descriptions of participation in academic papers; and dealing with different definitions of impact. This paper aims to advance methods for systematically reviewing the impact of participation in health research, drawing on recent systematic review guidance. Practical examples for dealing with issues at each stage of a review are provided based on recent experience. Recommendations for improving primary research on participation in health are offered and key points to consider during the review are summarised.

Background: Developing, maintaining, and sustaining undergraduate medical students’ research involvement will enable future healthcare practitioners to practice more appropriate evidence-based clinical medicine. Objective: To assess the participation in health research and factors promoting it among undergraduate medical students in Puducherry. Methodology: A descriptive cross-sectional study was conducted among undergraduate medical students in Puducherry over a period of three months (August-October 2023). Systematic random sampling was applied to recruit 360 study participants based on Chellaiyan et al. A pre-tested, semi-structured questionnaire was used to collect the data, including socio-demographic characteristics, academic performance, participants’ attitudes, perceived motivational and barrier factors towards health research, and current involvement in health research. Data were entered in MS Excel 2019 and analyzed using SPSS v16.0. Results: A total of 360 participants were interviewed, of whom 51.6% were female and the majority (86.7%) were hostelers. Among the 360 study participants, only around one-tenth of the participants”41 (11.39%)” have participated in the health research. The factors of gender, competency-based medical education approach, and grade of the participants in the recent university exam were associated with participation in health research. The majority (90.4%) of the participants were highly motivated to participate in health research. The main barriers identified are lack of funds, collaboration, mentorship, time to conduct, and systematic training in the research methodology. Conclusion: Participation in health research has doubled since the introduction of competency-based medical education. Still, participation could be improved by addressing the identified barriers. Studentship programs, young researcher awards, systematic training programs integrated into the curriculum, etc. could also compute the participation in health research among undergraduate medical students.

Research examining Arab and Middle Eastern and North African (MENA) health disparities faces several research limitations. These obstacles include unrepresentative national data due to the absence of a MENA identifier on the US Census, and a lack of Arab/MENA American participant trust in surveying bodies. This research hesitancy prompts the need for targeted investigation of the barriers preventing Arab/MENA Americans from participating in health research. Using community- and patient-centered methods, we created and disseminated a patient-facing survey to identify barriers to Arab/MENA American research participation. Through regular meetings and collaboration with stakeholders on research instrument development and participant recruitment, a novel quantitative survey was created (April-May 2023) to identify barriers affecting Arab/MENA American participation in health research and to explore their experiences and opportunities for improvement in the healthcare sector. The survey instruments assessed interest in research, as well as the motivators and barriers to clinical research participation. The data were analyzed quantitatively using descriptive statistics and logistic regression models. A total of 149 respondents had non-missing values on both outcomes. The study sample was largely college educated and foreign-born. Over three quarters of respondents (77.5%) felt they knew what health research was while slightly less than three quarter of respondents (72.5%) would accept to participate in a health research study in the future. Those who were foreign-born, in lower income levels (< $65k), or had low English proficiency or acculturation were less likely to report knowing what health research was. Facilitators to participating in research included a belief that participation would improve health, the idea of contributing to science, if monetary compensation was available, and if participation could be withdrawn at any time. These data further enhance our knowledge of Arab/MENA American comfortability with health research participation and can help inform future interventions. Immigration and sociodemographic factors are related to knowledge and willingness to participate as are several ideals including a desire to improve community health.

The health and health care of women veterans

Background: Increasingly clinical and health research awareness is a priority for health and medical research communities. Translational research, including the prevention and treatment of conditions, relies upon proper funding as well as public participation in research studies. This requires executing more effective communication strategies to care for recipients and the community at large – providing the downstream benefit to improved public health and patient care. Without new and improved approaches, recruiting research volunteers will remain a significant challenge for clinical research teams, particularly as limited funding necessitates smaller budgets and shorter timelines to engage participants. Objective: This community-based project partnered the complementary strengths of a public library (the Library) located in the same city as an academic research centre (the University): The University’s research infrastructure and the Library’s community and information delivery expertise combined to impact awareness of clinical research in the local population. Methods: This project utilised a multi-method approach to assess interest in health research, to deliver relevant information on community-relevant health topics and to increase awareness of health research in general. It was designed with the community to identify a sustainable, affordable model to deliver health information and illuminate the role of research in the process. Results: The project demonstrated a successful community-based model, utilising Health Research Forums and online resources to increase the connection between health research information and health research participation opportunities. Conclusion: By linking researchers with community members, providing related resources to augment linkage between health information and research, the project demonstrated an increased awareness regarding opportunities that exist for community participation in research through a sustainable model.

Heightened anti-Arab/Middle Eastern and North African (MENA) xenophobia in the United States (US) coupled with the addition of a MENA category on the next US Census call into attention the health needs of this minoritized population. Targeted research is needed to better understand the factors that influence Arab/MENA American participation in US-based health research and health care. A novel qualitative interview guide was constructed to better understand the health research experiences, health care experiences and needs of Arab/MENA patients nationally. Patients were recruited through the Arab American Health Network Alliance (AAHNA) community connections. Semi-structured interviews were conducted virtually in English and Arabic, and qualitative data was interpreted through iterative thematic analysis using inductive reasoning. A total of seventeen interviews (n = 17) were completed (14 in English, 3 in Arabic). Notably, the majority identified as female (82%) and have resided in the US for 18years or longer (53%). Three main themes were identified (1) Individual-level Comfortability and Access to Research Participation, (2) Advancing Community Health Outcomes and Participation, and (3) Structural Barriers as Drivers of Health Disparities. The health research and health care experiences explored in this project have the potential of informing future inquiries on Arab/MENA American health. For instance, we suggest building community trust, providing equitable compensation and support, increasing health workforce diversity, and advocating for affordable health care, all to improve Arab/MENA patient participation in health research.

Medical research studies often do not include ethnic and racial minorities as study participants in numbers that are representative of their populations. A study published in the November 2006 issue of the Journal of Health Care for the Poor and Underserved aimed to determine whether the paucity of minorities included in research could be explained by differences in willingness and misgivings related to participation in health research. The study, funded by the National Institute of Dental and Craniofacial Surgery, was conducted by a research team within the Tuskegee Legacy Project (TLP), which was inspired by a 1994 bioethics conference at the University of Virginia. The research team was created to assess how the infamous Tuskegee Syphilis Study affected the attitudes of black Americans toward health research. From 1932 to 1972, 399 black men with syphilis were studied to observe the effects of untreated syphilis, even though effective treatment was already available. This unethical study has often been used to explain the assumption that blacks may be more prone than whites to distrust research and refuse to participate. To test this assumption, the research team developed the TLP Questionnaire, which contained two scales: the Likelihood of Participation Scale and the Guinea Pig Fear Factor Scale, which measured self-reported general willingness to participate in research and fear of participating in research, respectively. The TLP Questionnaire was taken by more than 1,000 black, white, and Hispanic residents of four U.S. cities (two in Alabama including Tuskegee, one in Texas, and one in Connecticut). Significantly, the results showed that only about 30% of all people surveyed expressed a willingness to participate in research studies. Blacks were 1.8 times as likely as whites to fear participating in biomedical research. Still, they were equally as willing to participate in research as whites. “Given the history of the treatment of African-Americans in our country, it makes sense that blacks would have a heightened awareness of potential dangers,” says lead author Ralph V. Katz, chairman of the Department of Epidemiology and Health Promotion at the New York University College of Dentistry. These findings are consistent with the few other studies in which racial/ethnic differences in research participation have been assessed. They also are particularly important in studies addressing health disparities and those that aim to study environmental justice issues in minority populations. “African Americans come from varied experiences in the health care system. As such, there is no monolithic response to health-seeking behaviors, including participation in health research,” says Ruth Browne, CEO of the Arthur Ashe Institute for Urban Health in Brooklyn, New York. “This really points to the importance of culturally appropriate outreach efforts.”

BackgroundThe participation of trainers and trainees in health research is critical to advance medical science. Overcoming barriers and enhancing incentives are essential to sustain a research culture and extend the frontiers of medical education. In this study, we investigated the roles of individual and system factors influencing trainee resident participation in health research in Enugu, south-eastern Nigeria.MethodsThis cross-sectional survey of trainee residents was conducted across three residency training centres in Enugu, Nigeria, between February and March, 2010. The number and speciality distribution of trainee residents were determined from personnel records at each centre. A 19-item questionnaire was used to record demographic characteristics, research training/experience, and attitudes toward and perceived barriers to health research. Data were analysed to yield frequencies, percentages and proportions. Values of p < 0.05 were considered significant.ResultsThe response rate was 93.2%. The respondents (n = 136) comprised 109 males and 27 females. Their mean ± standard deviation age was 35.8 ± 5.6 years (range: 25–53 years). Participation in research was significantly associated with previous research training [odds ratio (OR): 2.90; 95% confidence interval (CI): 1.35–6.25, p = 0.003, β = 22.57], previous research participation (OR: 2.21; 95% CI: 0.94–5.29, p = 0.047, β = 22.53) and research publication (OR: 2.63; 95% CI: 1.00–7.06, p = 0.03, β = 22.57). Attitude towards research was significantly influenced by perceived usefulness of research in patient care (OR: 7.10; 95% CI: 3.33–15.13, p = 0.001), job promotion (OR: 8.97; 95% CI: 4.12–19.53, p = 0.001) and better understanding of disease (OR: 21.37; 95% CI: 8.71–54.44, p = 0.001). Time constraints (OR: 0.06; 95% CI = 0.025–0.14, p = 0.001), funding (OR: 0.028; 95% CI: 0.008–0.10, p = 0.001) and mentorship (OR: 0.086; 95% CI: 0.36–0.21, p = 0.001) were significant barriers to research participation.ConclusionsSystem and individual factors are significant incentives to research participation, while system-derived factors are significant barriers. Pre-residency research, dedicated research time, adequate research funding and commensurate research mentorship rewards are instructive. Prospective longitudinal studies are warranted to confirm these findings.

Traditionally, patients are rarely seen as partners in health research; their influence on priority setting, research design, the undertaking of research, and interpretation and dissemination of findings was marginal. Nowadays, health researchers, funding agencies, governments, and patient organizations are beginning to acknowledge that the passive role of patients in health research is no longer satisfactory. The emerging commitment and consensus concerning the aims and features of patient participation in research have created a need for an appropriate method to engage patients as partners in health research. In this article, the author argues that a responsive-constructivist approach to evaluation fits with the aims and features of patient participation. She illustrates its potential with a case example that concerns a dialogue among patients and (clinical) researchers in the field of spinal cord injuries. She reflects on learning experiences and the (un)expected difficulties and potentials in creating social conditions for patient participation in health research.

Migrants' participation in health research is essential to give voice to their needs and inform evidence-based practice. We conducted a mixed-methods study with migrants living in Leicester, United Kingdom, to understand their perceptions of participation in health research and factors influencing participation. Our study included a questionnaire and focus groups with migrants. Interviews and focus groups were also conducted with key informants. The study was carried out at two sites in Leicester. Questionnaire data were analysed descriptively in R. The COM-B framework was used to thematically analyse interview and focus group transcripts. Workshops with public members of migrant origin helped with data interpretation and analysis. 119 questionnaires and 4 focus groups (n = 28) were completed with migrants. Seven interviews and one focus group (n = 7) were conducted with key informants. Questionnaire respondents originated from 34 different countries, with a significant proportion (25%) identifying themselves as asylum seekers/refugees. Migrants in the focus groups were from 16 different countries and were mainly asylum seekers/refugees (n = 18). The three components of the COM-B model (Capability, Opportunity and Motivation) were identified as the main themes, and descriptive statistics from the questionnaire data have been used to supplement the 16 sub-themes. Individual capabilities encompassing awareness and perception of research, language abilities and skills in the use of technology significantly influenced participation. Simultaneously, the presence or absence of opportunities such as costs, competing needs and priorities, healthcare access and experiences in the United Kingdom, language barriers, opportunities for learning and taking part, precarious living conditions and socio-cultural norms and perceptions about health were found to be important for research participation. Motivations to take part in research included trust, context of the research, need-based research, altruism, desire to be heard and receiving incentives. Our study contributes to the limited evidence base exploring migrants' participation in health research. Our findings, grounded in the COM-B model, exhibit how migrants' motivations, influenced by a host of individual capabilities and environmental and social opportunities, can influence motivation and impact research participation behaviour. These findings may support the design of accessible, inclusive, equitable and impactful health research involving underserved groups. Patient and Public Involvement and Engagement (PPIE) in the project was obtained through the EMBRACE (East Midlands Migrant Research Advisory Collaborative) group, which was created as a migrant specific advisory group in 2019. We recruited new migrant members into the group and involved them in the interpretation of the study results. We organised two workshops with the group, and in the first workshop, held in February 2024, nine members took part to review the preliminary results and offer insights in contextualising and interpreting the data. The research team took into consideration the feedback received at the workshop and integrated it into the analysis. The final analysis was presented to the group again in September 2024, and the discussions held at that workshop were instrumental in shaping this manuscript.