Improving diversity in cancer research trials

The story of the cancer disparities research network

Melissa A. Simon, Erika E. De La Riva, Raymond Bergan, Carrie Norbeck, June M. McKoy, Piotr Kulesza, XinQi Dong, Julian Schink, Linda Fleisher

Research output: Contribution to journalArticle

11 Citations (Scopus)

Abstract

The participation of racial and ethnicminorities and underserved populations in clinical trials is a critical link between scientific innovation and improvements in health care delivery and health outcomes. However, these population groups continue to be underrepresented in research. We describe the development of the Cancer Disparities Research Network (CDRN) to improve minority and underserved populations' participation in biobanking research. Between February and October 2011, we conducted a regional assessment to identify challenges and opportunities for cancer trials and biobanking research across the CDRN. Representatives from ten CDRN biorepository facilities completed an online survey assessing their facilities' minority biospecimen collection, biobanking practices, and education/outreach initiatives. Representatives of eight facilities also participated in stakeholder interviews. The majority (70 %) of facilities reported that specimens were available for research, although only one tenth of these specimens were from non-White patients. Most facilities collected a patient's age, gender, race, medical history, and ethnicity with samples; however, less than half also collected family health history, education level, household income, or primary language spoken. In addition, few institutions collected Asian orHispanic subgroup information.Only a few reported biospecimen collection outreach programs specifically targeting minority and underserved populations.Biospecimen directors and administrators indicated that funding, biospecimen sharing procedures, and standardization barriers limited their facilities from collaborating in biospecimen collection programs, despite their great interest. These findings suggest that the CDRN can provide opportunities for collaboration, resource sharing, and fostering of research ideas to address cancer disparities in biospecimenresearch.

Original languageEnglish (US)
Pages (from-to)366-374
Number of pages9
JournalJournal of Cancer Education
Volume29
Issue number2
DOIs
StatePublished - 2014
Externally publishedYes

Fingerprint

Research
Neoplasms
Vulnerable Populations
Medical History Taking
Foster Home Care
Administrative Personnel
Health Education
Population Groups
Language
Clinical Trials
Interviews
Delivery of Health Care
Education
Health

Keywords

  • Biobanking
  • Cancer research
  • Clinical trials
  • Minority and underrepresented populations

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health
  • Oncology
  • Medicine(all)

Cite this

Improving diversity in cancer research trials : The story of the cancer disparities research network. / Simon, Melissa A.; De La Riva, Erika E.; Bergan, Raymond; Norbeck, Carrie; McKoy, June M.; Kulesza, Piotr; Dong, XinQi; Schink, Julian; Fleisher, Linda.

In: Journal of Cancer Education, Vol. 29, No. 2, 2014, p. 366-374.

Research output: Contribution to journalArticle

Simon, MA, De La Riva, EE, Bergan, R, Norbeck, C, McKoy, JM, Kulesza, P, Dong, X, Schink, J & Fleisher, L 2014, 'Improving diversity in cancer research trials: The story of the cancer disparities research network', Journal of Cancer Education, vol. 29, no. 2, pp. 366-374. https://doi.org/10.1007/s13187-014-0617-y
Simon, Melissa A. ; De La Riva, Erika E. ; Bergan, Raymond ; Norbeck, Carrie ; McKoy, June M. ; Kulesza, Piotr ; Dong, XinQi ; Schink, Julian ; Fleisher, Linda. / Improving diversity in cancer research trials : The story of the cancer disparities research network. In: Journal of Cancer Education. 2014 ; Vol. 29, No. 2. pp. 366-374.
@article{c1f7cf5f224345fabefc6e05dfa0bfc9,
title = "Improving diversity in cancer research trials: The story of the cancer disparities research network",
abstract = "The participation of racial and ethnicminorities and underserved populations in clinical trials is a critical link between scientific innovation and improvements in health care delivery and health outcomes. However, these population groups continue to be underrepresented in research. We describe the development of the Cancer Disparities Research Network (CDRN) to improve minority and underserved populations' participation in biobanking research. Between February and October 2011, we conducted a regional assessment to identify challenges and opportunities for cancer trials and biobanking research across the CDRN. Representatives from ten CDRN biorepository facilities completed an online survey assessing their facilities' minority biospecimen collection, biobanking practices, and education/outreach initiatives. Representatives of eight facilities also participated in stakeholder interviews. The majority (70 {\%}) of facilities reported that specimens were available for research, although only one tenth of these specimens were from non-White patients. Most facilities collected a patient's age, gender, race, medical history, and ethnicity with samples; however, less than half also collected family health history, education level, household income, or primary language spoken. In addition, few institutions collected Asian orHispanic subgroup information.Only a few reported biospecimen collection outreach programs specifically targeting minority and underserved populations.Biospecimen directors and administrators indicated that funding, biospecimen sharing procedures, and standardization barriers limited their facilities from collaborating in biospecimen collection programs, despite their great interest. These findings suggest that the CDRN can provide opportunities for collaboration, resource sharing, and fostering of research ideas to address cancer disparities in biospecimenresearch.",
keywords = "Biobanking, Cancer research, Clinical trials, Minority and underrepresented populations",
author = "Simon, {Melissa A.} and {De La Riva}, {Erika E.} and Raymond Bergan and Carrie Norbeck and McKoy, {June M.} and Piotr Kulesza and XinQi Dong and Julian Schink and Linda Fleisher",
year = "2014",
doi = "10.1007/s13187-014-0617-y",
language = "English (US)",
volume = "29",
pages = "366--374",
journal = "Journal of Cancer Education",
issn = "0885-8195",
publisher = "Springer Publishing Company",
number = "2",

}

TY - JOUR

T1 - Improving diversity in cancer research trials

T2 - The story of the cancer disparities research network

AU - Simon, Melissa A.

AU - De La Riva, Erika E.

AU - Bergan, Raymond

AU - Norbeck, Carrie

AU - McKoy, June M.

AU - Kulesza, Piotr

AU - Dong, XinQi

AU - Schink, Julian

AU - Fleisher, Linda

PY - 2014

Y1 - 2014

N2 - The participation of racial and ethnicminorities and underserved populations in clinical trials is a critical link between scientific innovation and improvements in health care delivery and health outcomes. However, these population groups continue to be underrepresented in research. We describe the development of the Cancer Disparities Research Network (CDRN) to improve minority and underserved populations' participation in biobanking research. Between February and October 2011, we conducted a regional assessment to identify challenges and opportunities for cancer trials and biobanking research across the CDRN. Representatives from ten CDRN biorepository facilities completed an online survey assessing their facilities' minority biospecimen collection, biobanking practices, and education/outreach initiatives. Representatives of eight facilities also participated in stakeholder interviews. The majority (70 %) of facilities reported that specimens were available for research, although only one tenth of these specimens were from non-White patients. Most facilities collected a patient's age, gender, race, medical history, and ethnicity with samples; however, less than half also collected family health history, education level, household income, or primary language spoken. In addition, few institutions collected Asian orHispanic subgroup information.Only a few reported biospecimen collection outreach programs specifically targeting minority and underserved populations.Biospecimen directors and administrators indicated that funding, biospecimen sharing procedures, and standardization barriers limited their facilities from collaborating in biospecimen collection programs, despite their great interest. These findings suggest that the CDRN can provide opportunities for collaboration, resource sharing, and fostering of research ideas to address cancer disparities in biospecimenresearch.

AB - The participation of racial and ethnicminorities and underserved populations in clinical trials is a critical link between scientific innovation and improvements in health care delivery and health outcomes. However, these population groups continue to be underrepresented in research. We describe the development of the Cancer Disparities Research Network (CDRN) to improve minority and underserved populations' participation in biobanking research. Between February and October 2011, we conducted a regional assessment to identify challenges and opportunities for cancer trials and biobanking research across the CDRN. Representatives from ten CDRN biorepository facilities completed an online survey assessing their facilities' minority biospecimen collection, biobanking practices, and education/outreach initiatives. Representatives of eight facilities also participated in stakeholder interviews. The majority (70 %) of facilities reported that specimens were available for research, although only one tenth of these specimens were from non-White patients. Most facilities collected a patient's age, gender, race, medical history, and ethnicity with samples; however, less than half also collected family health history, education level, household income, or primary language spoken. In addition, few institutions collected Asian orHispanic subgroup information.Only a few reported biospecimen collection outreach programs specifically targeting minority and underserved populations.Biospecimen directors and administrators indicated that funding, biospecimen sharing procedures, and standardization barriers limited their facilities from collaborating in biospecimen collection programs, despite their great interest. These findings suggest that the CDRN can provide opportunities for collaboration, resource sharing, and fostering of research ideas to address cancer disparities in biospecimenresearch.

KW - Biobanking

KW - Cancer research

KW - Clinical trials

KW - Minority and underrepresented populations

UR - http://www.scopus.com/inward/record.url?scp=84905573798&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84905573798&partnerID=8YFLogxK

U2 - 10.1007/s13187-014-0617-y

DO - 10.1007/s13187-014-0617-y

M3 - Article

VL - 29

SP - 366

EP - 374

JO - Journal of Cancer Education

JF - Journal of Cancer Education

SN - 0885-8195

IS - 2

ER -