You need a medical procedure or a test, or might be interested in being part of a research study.
But the piece of paper that’s supposed to spell out exactly what you’re getting into and how it could help or hurt isn’t the easiest thing to understand.
Informed consent documents can be more incomprehensible if you’re not fluent in English, like some people who are deaf and communicate in American Sign Language.
“We have a lot of experience with people who don’t understand forms,” said Robert Pollard, director of the Deaf Wellness Center, who also works for the National Center for Deaf Health Research at the University of Rochester Medical Center. “It’s a simple step that they don’t understand informed consent.”
n an effort to improve the process, Pollard, in partnership with National Center for Deaf Health Research, will lead a study that compares three different ways of delivering the message of informed consent. The study is funded by a four-year, $600,000 grant from the National Institutes of Health that was awarded in September. Enrollment is expected to start early in 2013.
The findings could have implications for others who are not proficient in English. But its application to deaf people is especially keen in Rochester, which has more deaf and hard-of-hearing residents per capita than the national average, according to a report by the National Technical Institute for the Deaf at Rochester Institute of Technology. URMC and other entities conduct studies on different aspects of health.
“We don’t want to exclude deaf people from research,” Pollard said.
Deaf people also need full understanding of what’s entailed in any medical treatment. Pollard, who holds a doctorate in psychology and is a professor of psychiatry, has made numerous films for deaf audiences about health. He features deaf people from the community using ASL in everyday situations to provide information about various topics.
Pollard said that English literacy is a struggle for many deaf people. Although there is a wide variability, the average reading level for a deaf high school graduate in the U.S. is fourth grade. “Those kinds of informed consent documents are way above fourth grade.”
