July 20th, 2009
01:27 PM ET

A researcher's remix: A poetic take on medicine

By Akash Goel
CNN Medical News Intern

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.

“Poetry 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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soundoff (8 Responses)
  1. Elmer Houser

    Health care could be funded by eliminating the Travel an Entertainment tax deduction. Wealthy business owners literally live out of their business; expensive cars, fancy resorts, even household costs.

    July 22, 2009 at 13:31 | Report abuse | Reply
  2. Joyce Mitchell

    Dr. Gupta can you please explain why our insurance need a referral every time I go to a specialist. I had Leg Surgery and upon returning for my first visit the other leg had developed swelling and I could hardly walk. I, being concerned, called it to the surgeon's attention, but he just ignored it completely. I had to get another referral before he would talk to me. My primary doctor did not give me a referral. I suffered for months before getting it cared for. I have the insurance the state provides for it employees. When I go for care I have to push to get it taken care of, while my husband goes in and the doctor suggest and gets referrals for him. I stumped my toe and it took 3 months to get an x-ray which was termed an old injury. I'm still walking with a crooked toe, now foot. I'm not a body, I's a digit.

    July 23, 2009 at 06:57 | Report abuse | Reply
  3. Lil Lee

    Hi Dr. Gupta,

    Have you heard of NAET and EFT? It's short for Nambudripad's Allergy Elimination Treatments and Emotional Freedom Therapy. These are holistic treatments used for pain relief, addiction elimination, allergy symptoms such as sore throat, runny nose, skin hives, skin diseases, swollen glands, and other internal illnesses. Unfortunately not many people know about these natual holistic treatments and our insurances do not cover it even after my primary doctor made a referral to see an NAET doctor. I was treated for allergies of many types and now those allergies are eliminated permanently. John King who had a swollen right eye a few days ago would benefit from la visit an NAET/EFT doctor. Most people who have minor allergy symptoms develop worse symptoms later and even prophylaxis or death.

    July 24, 2009 at 15:34 | Report abuse | Reply
  4. gloria palestrini

    Dr. Gupta, I would like to know exactly what percentage of Americans are without healthcare insurance. I am having an interaction with someone on facebook that insists only l0% of the US population is
    without healthcare, I disagree.

    August 2, 2009 at 18:47 | Report abuse | Reply
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Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.