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Opening doors to clinical trial participation among Hispanics: Lessons learned from the Spanish translation of ResearchMatch

Published online by Cambridge University Press:  11 September 2020

Loretta M. Byrne
Affiliation:
Vanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TN, USA
Sarah K. Cook
Affiliation:
Vanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TN, USA
Nan Kennedy
Affiliation:
Vanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TN, USA
Michael Russell
Affiliation:
Vanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TN, USA
Rebecca N. Jerome
Affiliation:
Vanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TN, USA
Jason Tan
Affiliation:
Vanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TN, USA
Claudia Barajas
Affiliation:
Vanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TN, USAVanderbilt-Ingram Cancer Center, Vanderbilt University Medical Center, Nashville, TN, USA
Consuelo H. Wilkins
Affiliation:
Vanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TN, USADepartment of Medicine, Vanderbilt University Medical Center and Department of Internal Medicine, Meharry Medical College, Nashville, TN, USAOffice of Health Equity, Vanderbilt University Medical Center, Nashville, TN, USA
Paul A. Harris*
Affiliation:
Vanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TN, USADepartment of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN, USA
*
Address for correspondence: P.A. Harris, PhD, Vanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, 2525 West End Avenue, Suite 600, Nashville, TN, USA. Email: paul.a.harris@vanderbilt.edu
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Abstract

Introduction:

Clinical trial participation among US Hispanics remains low, despite a significant effort by research institutions nationwide. ResearchMatch, a national online platform, has matched 113,372 individuals interested in participating in research with studies conducted by 8778 researchers. To increase accessibility to Spanish speakers, we translated the ResearchMatch platform into Spanish by implementing tenets of health literacy and respecting linguistic and cultural diversity across the US Hispanic population. We describe this multiphase process, preliminary results, and lessons learned.

Methods:

Translation of the ResearchMatch site consisted of several activities including: (1) improving the English language site’s reading level, removing jargon, and using plain language; (2) obtaining a professional Spanish translation of the site and incorporating iterative revisions by a panel of bilingual community members from diverse Hispanic backgrounds; (3) technical development and launch; and (4) initial promotion.

Results:

The Spanish language version was launched in August 2018, after 11 months of development. Community input improved the initial translation, and early registration and use by researchers demonstrate the utility of Spanish ResearchMatch in engaging Hispanics. Over 12,500 volunteers in ResearchMatch self-identify as Hispanic (8.5%). From August 2018 to March 2020, 162 volunteers registered through the Spanish language version of ResearchMatch, and over 500 new and existing volunteers have registered a preference to receive messages about studies in Spanish.

Conclusion:

By applying the principles of health literacy and cultural competence, we developed a Spanish language translation of ResearchMatch. Our multiphase approach to translation included key principles of community engagement that should prove informative to other multilingual web-based platforms.

Information

Type
Research Article
Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
Copyright
© The Association for Clinical and Translational Science 2020
Figure 0

Fig. 1.The ResearchMatch approach to matching researchers with volunteers.

Figure 1

Fig. 2.Results from the Spanish ResearchMatch quality improvement survey. Scales of 1–100, where 100 = “totally agree process was easy” and “very easy to understand”.

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