July 20th, 2009
01:27 PM ET
By Akash Goel
After my first year of medical school, I held an idyllic optimism about communication and the doctor-patient relationship. We learn about these interactions from videos that are perfectly staged with cued actors in camera make-up. After five minutes of talking with Jessica Ridpath, I confidently threw these false pretenses out the window.
She told me tragically unimaginable stories of an immigrant mother and a barely literate filmmaker. The mother helplessly killed her sick infant after being told to "force fluids." The filmmaker couldn't read the consent form for the "quick fix" proposed to solve her "female problem." She did not realize she had had a hysterectomy until her six-week follow-up visit.
Ridpath desperately recites these examples with a looming sense of urgency. Both a slam poet and research coordinator at Group Health Research Institute (GHRI), Ridpath is on a verbal tirade to improve communication and poor language in health care.
â€œPoetry is about making something meaningful," she explained. "Communication in health care is the same way - if the meaning doesn't land, then you haven't communicated."
She believes a human rights issue is at stake. In 2004, the Institute of Medicine reported that complex language prevents 93 million Americans - half of the adult population - from finding, understanding and acting on essential health information. While health illiteracy clearly has harmful consequences in clinical situations, Ridpath also believes it disenfranchises human research subjects because they are unable to understand consent forms. This is perhaps a striking paradox as the very purpose of consent forms is to ensure one's compliance and understanding of the research.
She champions the cause of human research subjects because they are acutely vulnerable and are many times participating in research as a last resort or as a personal sacrifice to advance clinical knowledge.
"People have a right to clear information when they're spending time–and perhaps risking their health and/or confidentiality–for the greater good," she said.
Most informed consent forms for research studies are written well above the national adult average of an eighth-grade reading level. Given this, Ridpath argues that the scientific community is not abiding by federal regulations that require research studies to be "understandable to the subject." This mandate traditionally meant that consent forms were to be written in research subject's native language. However, if the forms aren't comphrensible, the language might as well be foreign.
Four years ago Ridpath launched PRISM, the Project to Review and Improve Study Materials. Using the Flesch-Kincaid readability algorithm, she reviewed several years worth of consent forms and cataloged language that communicated rather than mystified. Sampling language that worked, Ridpath essentially created a remix of research study language in the form of a toolkit that offers communication strategies and proper plain language templates for researchers.
Ridpath calls the toolkit "a rallying cry to the research community."
"It reminds them of their ethical obligation to protect the rights and interests of research participants," she said. "And it gives them tools to help them do a better job of that."
While the toolkit has already had thousands of downloads, Ridpath's goal is to proactively put the kit in the hands of more researchers across the country and begin providing training and editing services to institutions that lack these resources in-house.
"In my opinion," she argued, "the effectiveness and integrity of the entire research enterprise are severely limited when research isn't disseminated in a meaningful way to the public."
Next Ridpath wants to tackle issues of numeracy - literacy about numbers - to help people understand the cost-benefit analysis of treatment options for patients. She believes we have a societal knee-jerk reaction to medicate via pills rather than to modify lifestyle.
"If you speak more like a poet and think about expressing meaning," she said, "you can convey that message in a way that will inspire action."
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