Predictors of Willingness to Participate in Biospecimen Donation and Biobanking among Appalachian Adults

Llanos, Adana A.M.; Young, Gregory S.; Baltic, Ryan; Lengerich, Eugene J.; Aumiller, Betsy; Dignan, Mark; Paskett, Electra D.

doi:10.1353/hpu.2018.0056

Cited by 4 publications

(15 citation statements)

References 12 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…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: Discussionmentioning

confidence: 93%

“…However, there still is an immense opportunity and need to improve diversity among biomedical research participants. Prior studies regarding diversity in research participation have emphasized raising awareness and education, building community relationships, and implementing community‐based research to increase awareness, access, and ultimately participation in biomedical research . The diversity of the research participants in the current study, and the increased likelihood of participation in biomedical research among underrepresented racial and ethnic groups, may be due in part to each site's collaborations with local, well‐established, and long‐standing community partners and our ongoing outreach, engagement, and research programs …”

Section: Discussionmentioning

confidence: 98%

“…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%

“…The paucity of diversity in biospecimen science and cancer genomic studies are potentially more tied to a lack of communication and engagement of diverse and underserved populations as opposed to their willingness/unwillingness to participate and/or reasons related to medical distrust . Formative research efforts that are inclusive of diverse and underserved populations regarding biospecimen science have shed some light on the following areas: awareness and interest in biospecimen donation for research, reasons for nonparticipation, collaborative study designs that include community‐based approaches to engage and integrate community research partners, and underserved populations in this type of research, in addition to data regarding cultural perspectives and requirements for research specific to biospecimen science . In fact, exploratory studies examining motivational factors and barriers to participation in biospecimen donation from diverse racial and ethnic minorities have suggested that the majority of African Americans and Hispanics/Latinos are willing to donate different types of biospecimens and that they do donate when asked …”

Section: Introductionmentioning

confidence: 99%

“…[13][14][15][16] Formative research efforts that are inclusive of diverse and underserved populations regarding biospecimen science have shed some light on the following areas: awareness and interest in biospecimen donation for research, reasons for nonparticipation, collaborative study designs that include community-based approaches to engage and integrate community research partners, and underserved populations in this type of research, in addition to data regarding cultural perspectives and requirements for research specific to biospecimen science. [14][15][16][17][18] In fact, exploratory studies examining motivational factors and barriers to participation in biospecimen donation from diverse racial and ethnic minorities have suggested that the majority of African Americans and Hispanics/ Latinos are willing to donate different types of biospecimens and that they do donate when asked. 19 The purpose of the current study was to examine factors associated with opportunity, actual participation, and willingness to participate in biomedical research broadly and specifically related to clinical trials and biospecimen donation among a diverse, multilingual sample across 3 distinct geographic areas.…”

Section: Introductionmentioning

confidence: 99%

See 4 more Smart Citations

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

View full text Add to dashboard Cite

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.

show abstract

Section: Discussionmentioning

confidence: 93%

Section: Discussionmentioning

confidence: 98%

Section: Access To Carementioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

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

View full text Add to dashboard Cite

show abstract

Project PLACE: Enhancing community and academic partnerships to describe and address health disparities

Barrett¹,

Ingraham²,

Bethea³

et al. 2020

Advances in Cancer Research

View full text Add to dashboard Cite

Utilizing SEER Cancer Registries for Population-Based Cancer Survivor Epidemiologic Studies: A Feasibility Study

Gallicchio

Elena

Fagan

et al. 2020

Cancer Epidemiology, Biomarkers &Amp; Prevention

View full text Add to dashboard Cite

Background: While the primary role of central cancer registries in the United States is to provide vital information needed for cancer surveillance and control, these registries can also be leveraged for population-based epidemiologic studies of cancer survivors. This study was undertaken to assess the feasibility of using the NCI's Surveillance, Epidemiology, and End Results (SEER) Program registries to rapidly identify, recruit, and enroll individuals for survivor research studies and to assess their willingness to engage in a variety of research activities.Methods: In 2016 and 2017, six SEER registries recruited both recently diagnosed and longer-term survivors with early age-onset multiple myeloma or colorectal, breast, prostate, or ovarian cancer. Potential participants were asked to complete a survey, providing data on demographics, health, and their willingness to participate in various aspects of research studies.Results: Response rates across the registries ranged from 24.9% to 46.9%, with sample sizes of 115 to 239 enrolled by each registry over a 12-to 18-month period. Among the 992 total respondents, 90% answered that they would be willing to fill out a survey for a future research study, 91% reported that they would donate a biospecimen of some type, and approximately 82% reported that they would consent to have their medical records accessed for research.Conclusions: This study demonstrated the feasibility of leveraging SEER registries to recruit a geographically and racially diverse group of cancer survivors.Impact: Central cancer registries are a source of high-quality data that can be utilized to conduct population-based cancer survivor studies.

show abstract

Predictors of Willingness to Participate in Biospecimen Donation and Biobanking among Appalachian Adults

Abstract: Appalachian adults were generally willing to participate in biobanking research.

Cited by 4 publications

References 12 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

Project PLACE: Enhancing community and academic partnerships to describe and address health disparities

Utilizing SEER Cancer Registries for Population-Based Cancer Survivor Epidemiologic Studies: A Feasibility Study

Contact Info

Product

Resources

About