COLUMBIA — Martin Ratermann has told his story many times — twice before a sizable crowd. But in a crowded conference room Tuesday, he still teared up as he recalled again the medical nightmare from which he's only recently emerged.
Doctors diagnosed Ratermann with stage 4 rectal cancer in July 2008. It was a cancer that was preventable, he said, but seven years of symptom dismissal by both him and his doctors resulted in what several physicians told him was the worst case they'd seen.
Ratermann faults a lack of good communication — in the health care system and between he and his physicians — for the severity of his disease.
After doctors removed a cancerous polyp following a routine colonoscopy in 2001, nobody told Ratermann he needed yearly follow-ups. When he mentioned concern about blood on his toilet paper at physicals in 2005 and 2006, doctors told him it was just a hemorrhoid and could take years to heal.
He said he accepted the doctors' assurances and didn't speak up when he should have.
"I didn't think it was my place to ask questions," Ratermann said. "Because I'm not a doctor, I'm just a woodworker."
Ratermann's feelings are not unique. Low levels of health literacy — a person's ability to obtain basic health information and use it to make appropriate medical decisions — impede patient care at facilities across the state and nation.
Low levels of health literacy also cost Missouri residents $5.2 billion annually, according to research done at the University of North Carolina at Chapel Hill. Patients unable to navigate preventative care options often resort to more expensive emergency services because they don't know what else to do.
Nearly 250 health professionals from across the state met Tuesday in Columbia to discuss various initiatives aimed at improving health literacy. Coordinated by the newlyformed nonprofit, Health Literacy Missouri, the summit focused on collaboration and partnership.
Pioneers in the effort
Arthur Culbert, president and CEO of Health Literacy Missouri, praised statewide efforts to provide services aimed at communication and comprehension in health care settings.
"Missouri is going to be a leader in health literacy," he said. "The state has aggressively embraced a variety of programs and initiatives focused on this incredibly important issue."
Health literacy is a fairly recent field, Culbert said.
"People have only just begun to understand its significance. That this many people even know what it is, is astounding," he said, referring to the full conference room.
Health Literacy Missouri works with health education centers, adult education programs and community-based health literacy projects from across the state. The group coordinates the efforts of a multitude of state resources.
"Through events like this, those groups can discover and strengthen each other," Culbert said.
The nonprofit is also working with pharmaceutical giant Merck & Co. to help it rewrite patient education materials on diabetes. So far, Culbert said, it's been a successful project.
Improving health literacy appeals to insurance companies and employers because it lowers their health costs and improves their bottom line, Culbert said.
In break-out sessions and side conversations, conference participants discussed ways to overcome major barriers to sufficient health, including limited English proficiency, poor reading comprehension and lack of education.
People need to know how to locate, interpret and apply medical information. Doctors can do this by creating health care experiences that are patient- and person-centered, Culbert said.
"In a sense, less is more," he said. "Overwhelming patients with so much technical information, it's counterproductive."
Panelists outlined three model programs based in St. Louis and Kansas City that provide targeted information to the public in strategic ways.
Representatives from Kansas City's Children's Mercy Hospital described in-hospital services that can improve patients' comprehension and, ultimately, their care.
For example, bilingual signs with clear, universal symbols help patients navigate the hospital and locate the correct services, said Sharon Wilkerson, co-chairwoman of the hospital's health literacy committee.
Other panelists discussed the integration of health literacy into public school and adult education curricula.
These sorts of programs can be used to serve particularly vulnerable subsets of the population, which include non-native speakers, people with low incomes or who are under-educated.
Health literacy became even more important with the passage of the federal insurance reform bill. Thirty-two million newly insured Americans might have to learn for the first time to sort through their many medical options, Culbert said, and so health care professionals must start creating materials that are understandable to all.
Ratermann was, in many ways, much luckier than most patients. He had access to doctor friends who referred him to the specialists who saved his life. His wife, Gwen, is Health Literacy Missouri's director of partnerships and initiatives and was also able to help.
"I don't know what people without (those resources) do. I honestly don't," Ratermann said.
He was referred to specialists at Siteman Cancer Center in St. Louis, where the level of care he received was drastically different.
There, he said, doctors and nurses took the time to answer his questions. His care was much more personal and presented to him in terms he could understand.
"The touch of a human hand and the tone of voice can do so much in the process we call healing," he said.
Ratermann said he hopes his story will prevent others from having the same terrible experience he had.
"I am here to form a partnership," he said. "It's a lot more fun to talk about your craft than your rectal cancer, but if I don't, who will?"