Creating a Database of HIV Prevention Clinical Trial Terminology and Translations

The Population Council recently launched a database of HIV-prevention clinical trial terminology in multiple languages. Translations in Context: A Database of HIV Prevention Terminology and Translation—available at lexicon.popcouncil.org—is the first of its kind. Designed to reduce the duplication of translation efforts in the field of HIV research, it is an open access, searchable database available to anyone with internet access. The database contains translations for hundreds of HIV prevention terms in seven languages (English, Setswana, Spanish, Swahili, Thai, Xhosa, Zulu). The goal of the database is to assist the process of fielding new HIV studies, since clear and correct translations are both important and costly. 

“It is critically important that researchers use words that are appropriate, correct, and understood in local languages and settings where they are working,” said Population Council researcher Barbara Friedland, who led the project, a collaboration between Council program and information technology staff. “But the translation process is costly. This tool enables researchers and community members to access existing translations.” 

The Translations in Context database enables researchers and community members to access existing translations of HIV-related terminology.

To ensure that HIV prevention clinical trials are conducted ethically, it is critical that participants fully understand the purpose as well as possible risks and benefits of the trial. Many HIV-related terms do not have equivalents in local languages, which can make it difficult to communicate complex concepts like microbicide and seroconversion. Even when terminology is translated, participants may have a different understanding than the intended meaning; misunderstandings have the potential to skew study results.

The terms in the database were gathered from previous and ongoing microbicide trials conducted by the Population Council, FHI360, and other institutions. The definitions were developed to be as simple as possible to facilitate translation between languages. The database includes scientific and medical research terminology, as well as sensitive or neutral terminology for sexual behavior, sexual relationships, and reproductive health issues.

In parallel with the creation of the database, FHI360 developed a toolkit—available on the database website—for eliciting terms and translations in settings where a lexicon does not yet exist.

“One of the toughest challenges for researchers designing clinical trials is making sure that people who participate in clinical research actually understand all the information they need to understand in order to give fully informed consent,” said Friedland. “Our goal in creating this database is to simplify and facilitate that process. This tool has the potential to reduce the cost of HIV prevention research and increase the benefits of donor investments.”


Sources 
Mack, Natasha, Catalina B. Ramirez, Barbara Friedland, and Soori Nnko. 2013. “Lost in translation: Assessing effectiveness of focus group questioning techniques to develop improved translation of terminology used in HIV prevention clinical trials,” PLOS ONE 8(9): e73799. http://bit.ly/1Pk0lHw. Accessed 8 April 2015.

Ramirez, Catalina, Natasha Mack, and Barbara Friedland. 2013. A Toolkit for Developing Bilingual Lexicons for International HIV Prevention Clinical Trials. New York: Population Council and FHI 360. http://www.popcouncil.org/uploads/pdfs/2013HIV_ LexiconDatabase.pdf. Accessed 8 April 2015.

Translations In Context: A Database of HIV Prevention Terminology and Translation; http://lexicon. popcouncil.org/about.php. Accessed 8 April 2015.

Funding
US Agency for International Development