Health Research Participation, Opportunity, and Willingness Among Minority and Rural Communities of Arkansas

McElfish, Pearl A.; Long, Christopher R.; Selig, James P.; Rowland, Brett; Purvis, Rachel S.; James, Laura P.; Holland, Angel; Felix, Holly C.; Narcisse, Marie‐Rachelle

doi:10.1111/cts.12561

Cited by 16 publications

(13 citation statements)

References 39 publications

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“…To achieve diversity in biomedical research participation, health systems including safety‐net systems serving diverse populations need to have the capacity and willingness to engage with research at the institutional level. As noted in prior studies, lack of access to research‐intensive academic medical centers limits access to cutting‐edge research that potentially could reduce health disparities …”

Section: Discussioncontrasting

confidence: 68%

“…This finding also underscores the importance of outreach and community engagement to increase awareness of biomedical research, including donating biospecimens because it may impact the likelihood of participating among those who are not diagnosed with cancer. It also highlights the need and, whenever possible, the opportunity for academic health and cancer centers to conduct community‐based biomedical research in the communities that they serve and not just in the clinic . This requires strong community partners who together with academic health centers and cancer centers can develop, implement, and test innovative strategies around outreach and engagement to bolster awareness and diversity in biomedical research participation, advance research, and reduce cancer disparities …”

Section: Discussionmentioning

confidence: 99%

“…As noted in prior studies, lack of access to research-intensive academic medical centers limits access to cutting-edge research that potentially could reduce health disparities. 8,9,11,17,27…”

Section: Access To Carementioning

confidence: 99%

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Factors associated with biomedical research participation within community‐based samples across 3 National Cancer Institute–designated cancer centers

Barrett

Rodriguez

Iachan

et al. 2020

Cancer

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Background Engaging diverse populations in biomedical research, including biospecimen donation, remains a national challenge. This study examined factors associated with an invitation to participate in biomedical research, intent to participate in biomedical research in the future, and participation in biomedical research and biospecimen donation among a diverse, multilingual, community‐based sample across 3 distinct geographic areas. Methods Three National Cancer Institute–designated cancer centers engaged in community partnerships to develop and implement population health assessments, reaching a convenience sample of 4343 participants spanning their respective catchment areas. Data harmonization, multiple imputation, and multivariable logistic modeling were used. Results African Americans, Hispanic/Latinos, and other racial minority groups were more likely to be offered opportunities to participate in biomedical research compared to whites. Access to care, history of cancer, educational level, survey language, nativity, and rural residence also influenced opportunity, intent, and actual participation in biomedical research. Conclusions Traditionally underserved racial and ethnic groups reported heightened opportunity and interest in participating in biomedical research. Well‐established community partnerships and long‐standing community engagement around biomedical research led to a diverse sample being reached at each site and may in part explain the current study findings. However, this study illustrates an ongoing need to establish trust and diversify biomedical research participation through innovative and tailored approaches. National Cancer Institute–designated cancer centers have the potential to increase opportunities for diverse participation in biomedical research through community partnerships and engagement. Additional work remains to identify and address system‐level and individual‐level barriers to participation in both clinical trials and biospecimen donation for research.

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Section: Discussioncontrasting

confidence: 68%

Section: Discussionmentioning

confidence: 99%

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Factors associated with biomedical research participation within community‐based samples across 3 National Cancer Institute–designated cancer centers

Barrett

Rodriguez

Iachan

et al. 2020

Cancer

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“…Building upon previous studies that suggested that women are less likely to share private social media information [20], we hypothesized that women would be less likely to share passive data as well. Although relevant research findings are mixed [21], we hypothesized that people of racial minority groups, compared with whites, would be less likely to share, given similar research on health research participation (eg, a study investigating African American participation [22]). Finally, on the basis of research on age and interest in mental health apps [23], we hypothesized that older patients would be less willing to share passive data.…”

Section: Introductionmentioning

confidence: 99%

Psychiatry Outpatients’ Willingness to Share Social Media Posts and Smartphone Data for Research and Clinical Purposes: Survey Study

Rieger¹,

Gaines²,

Barnett³

et al. 2019

JMIR Form Res

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BackgroundPsychiatry research has begun to leverage data collected from patients’ social media and smartphone use. However, information regarding the feasibility of utilizing such data in an outpatient setting and the acceptability of such data in research and practice is limited.ObjectiveThis study aimed at understanding the outpatients’ willingness to have information from their social media posts and their smartphones used for clinical or research purposes.MethodsIn this survey study, we surveyed patients (N=238) in an outpatient clinic waiting room. Willingness to share social media and passive smartphone data was summarized for the sample as a whole and broken down by sex, age, and race.ResultsMost patients who had a social media account and who were receiving talk therapy treatment (74.4%, 99/133) indicated that they would be willing to share their social media posts with their therapists. The percentage of patients willing to share passive smartphone data with researchers varied from 40.8% (82/201) to 60.7% (122/201) depending on the parameter, with sleep duration being the parameter with the highest percentage of patients willing to share. A total of 30.4% of patients indicated that media stories of social media privacy breaches made them more hesitant about sharing passive smartphone data with researchers. Sex and race were associated with willingness to share smartphone data, with men and whites being the most willing to share.ConclusionsOur results indicate that most patients in a psychiatric outpatient setting would share social media and passive smartphone data and that further research elucidating patterns of willingness to share passive data is needed.

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“…A 2015 focus group study done by the same group in South Carolina showed that rural residents believed that clinical trials involved deception more often than urban residents and expressed that their participation would depend on whether their doctor recommended it or whether the trial would benefit a family member's health [8]. A 2018 Arkansas study showed that 45% of adults would be willing to participate in health research and rural respondents did not differ from urban respondents on this, though only 8.5% of rural respondents reported that they had participated in research [9]. Nation-wide data on the actual inclusion of rural OAs in research are lacking.…”

Section: Introductionmentioning

confidence: 99%

Including older rural adults in research: Practical guidance for addressing the NIH Inclusion Across the Lifespan policy

Croff

Gowen

Lindauer

et al. 2020

J. Clin. Trans. Sci.

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Introduction: The NIH Inclusion Across the Lifespan policy has implications for increasing older adult (OA) participation in research. This study aimed to understand influential factors and facilitators to rural OA research participation. Methods: Thirty-seven rural adults aged ≥66 years participated in focus groups in community centers in four Oregon “non-metro” counties. Transcribed discussions were coded using open-axial coding by an interdisciplinary analytical team. Results: Ages were 66–96 (mean 82.2) years. Majority were women (64%) and white (86%). Primary, interrelated discussion themes were Motivation and Facilitators, Perceptions of Research, and Barriers to Research Participation. Participants were motivated to engage in research because they believed research had implications for improved longevity and quality of life and potentially benefited future generations. Motivational factors influencing participation included self-benefit and improving others’ lives, opportunities to socialize and learn about current research, research transparency (funding, time commitment, and requirements), and financial compensation. Perceptions influencing trustworthiness in research included funding source (industry/non-industry) and familiarity with the research institution. Barriers to research participation included transportation and concern about privacy and confidentiality. Suggestions for making research participation easier included researchers coming to rural communities and meeting participants in places where OAs gather and providing transportation and hotel accommodations. Conclusion: Lessons learned offer practical guidance for research teams as they address the new NIH Inclusion Across the Lifespan policy. Including OAs in research in ways that motivate and facilitate participation will be critical for a robust representation across the lifespan and in tailoring treatments to the specific needs of this population.

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Health Research Participation, Opportunity, and Willingness Among Minority and Rural Communities of Arkansas

Cited by 16 publications

References 39 publications

Factors associated with biomedical research participation within community‐based samples across 3 National Cancer Institute–designated cancer centers

Factors associated with biomedical research participation within community‐based samples across 3 National Cancer Institute–designated cancer centers

Psychiatry Outpatients’ Willingness to Share Social Media Posts and Smartphone Data for Research and Clinical Purposes: Survey Study

Including older rural adults in research: Practical guidance for addressing the NIH Inclusion Across the Lifespan policy

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