The Wednesday AccrualNet Blog Post (8-22-12): Lost in Translation
Originally posted by: Annette Galassi, AccrualNet Team Member, on the former Accrualnet site on August 23, 2012.
I’ve recently returned from Ethiopia, where I spent time on the oncology unit of a large public hospital. Although almost all of the health professionals spoke English, Amharic was their primary language and the language spoken by patients. I loved Ethiopia but found it difficult to not always understanding what was being said and unsettling to not know if I was really being understood.
Being in this position gave me a new appreciation for the challenges faced by our patients with limited English proficiency (LEP) - those individuals who do not speak English as their primary language and have a limited ability to read, speak, write or understand English. These patients must navigate a complex health care system and routinely interact with members of the health care team who do not speak their native language. If they are approached about joining a clinical trial, they may receive information about it from providers who have difficulty explaining concepts in “plain English” or through an interpreter. They are faced with a long, complex consent form that is barely comprehensible to those of us who are fluent in English.
What resources are available to help us make this process less daunting for our patients with LEP? One is the Office of Human Research Protections (OHRP) approved Short Form. This is a written consent document (stating that the elements of informed consent required have been presented orally) and a written summary of what is presented orally. A witness to the oral presentation is required and the participant must be given copies of both the short form document and the summary. The witness should be fluent in both English and the patient’s language and the English language consent document can serve as the summary. For additional information visit the OHRP web site.
What strategies, resources, or tools do you use for the informed consent process with participants with LEP? Do you use translation services for your consent documents? If so, how do you cover the associated costs?