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.
Download full-text PDF |
Source |
---|---|
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8057389 | PMC |
http://dx.doi.org/10.1017/cts.2020.539 | DOI Listing |
J Clin Transl Sci
November 2024
Vanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TN, USA.
Involving participants in the design of clinical trials should improve the overall success of a study. For this to occur, streamlined mechanisms are needed to connect the populations potentially impacted by a given study or health topic with research teams in order to inform trial design in a meaningful and timely manner. To address this need, we developed an innovative mechanism called the "ResearchMatch Expert Advice Tool" that quickly obtains volunteer perspectives from populations with specific health conditions or lived experiences using the national recruitment registry, ResearchMatch.
View Article and Find Full Text PDFJ Am Med Inform Assoc
October 2024
Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN 37203, United States.
Objective: Returning aggregate study results is an important ethical responsibility to promote trust and inform decision making, but the practice of providing results to a lay audience is not widely adopted. Barriers include significant cost and time required to develop lay summaries and scarce infrastructure necessary for returning them to the public. Our study aims to generate, evaluate, and implement ChatGPT 4 lay summaries of scientific abstracts on a national clinical study recruitment platform, ResearchMatch, to facilitate timely and cost-effective return of study results at scale.
View Article and Find Full Text PDFJ Clin Transl Sci
April 2024
Vanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TN, USA.
Background: There is no consensus on how to determine appropriate financial compensation for research recruitment. Selecting incentive amounts that are reasonable and respectful, without undue inducement, remains challenging. Previously, we demonstrated that incentive amount significantly impacts participants' willingness to complete various hypothetical research activities.
View Article and Find Full Text PDFAndrology
November 2024
Department of Urology, Vanderbilt University Medical Center, Nashville, Tennessee, USA.
Background: Sexual satisfaction is an important component of global quality life for many adult men. Substantial gaps exist in our appreciation of how age mediates sexual satisfaction in the context of functional sexual measures. We sought to evaluate modifiable factors associated with overall sexual satisfaction and health-related quality of life (HRQoL) in a large, age-stratified community-based sample of adult men.
View Article and Find Full Text PDFJ Patient Rep Outcomes
November 2023
Department of Epidemiology and Biostatistics, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
Background: A common method of pain assessment is the numerical rating scale, where patients are asked to rate their pain on a scale from 0 to 10, where 0 is "no pain" and 10 is "pain as bad as you can imagine". We hypothesize such language is suboptimal as it involves a test of a cognitive skill, imagination, in the assessment of symptom severity.
Methods: We used a large-scale online research registry, ResearchMatch, to conduct a randomized controlled trial to compare the distributions of pain scores of two different pain scale anchors.
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!