"Like I gotta take de meds, right doc?"

Some patients haven't got the health literacy skills to follow your instructions. More and longer hospital stays and less chance of a cure

By Susan Usher

In the popular mind, today's patient is a net-savvy researcher who arrives in your office with a stack of literature about her condition and a million questions to fit into a seven-minute visit. True enough every doctor has a few patients who match this description. But what about the others? You know the others -- the "easy" ones who listen to you attentively as you diagnose their ills and proffer advice but don't talk much, who answer questions vaguely or with nods and smiles. While they may take up little office time, the truth is many of these patients don't have a clue what they're supposed to do once they leave your office. And their health could be suffering as a result.

So what makes a patient a health literate patient? The American Medical Association defines health literacy as "the ability to read and comprehend prescription bottles, appointment slips and other essential health-related materials required to successfully function as a patient." Major studies in the US in the past two years have found that patients with low health literacy are less likely to understand their discharge diagnosis, reasons for taking medications, instructions for taking medications, plans for follow up tests and appointments, elements of self care, or all of the above. They're hospitalized at a higher rate -- and their chronic health conditions are less often kept under control.

CANADIAN TRENDS
Canadian research on literacy and health is scarce, but the problem is just as pressing here. Surveys in the 1990s revealed shocking levels of low functional literacy among Canadian adults. A 1996 Statistics Canada survey found that one in five Canadians had serious difficulty with printed material generally, and one in four had trouble reading more complicated material like labels on medications. Seniors, who use health care most, are among the least literate. The Canadian Public Health Association and Health Canada have gone some way toward addressing the issue and, slowly, isolated programs are starting to pop up across the country.

Dr Linda Shohet is one person working on the ground to improve patient information. She directs the Health Literacy Project at the Montreal General Hospital as a partnership between the hospital's nursing department and the Centre for Literacy of Quebec, of which she's executive director. The project has been operating in three of the hospital's units -- dialysis, oncology/hematology and the pre-operative centre -- to make staff more open to alternative ways of communicating with patients and to arouse their interest in the reasons why a patient may not be able to understand medical instructions. While the effort has been well received, especially by nurses, the hospital administrators have been slow to implement changes to its policy. "None of the MUHC hospitals even have a policy of what patient information should look like," she says. "At the moment everything is done unit by unit by people who have no training in writing patient information."

BEYOND THE THREE Rs
Dr Shohet believes we need to explore different ways of communicating in order to respond to individual patients and go beyond the notion of reading ability in our considerations of health literacy. "We need to consider why people are having difficulty with communication," she says. "It could be because they never learned to read and write, but it could also be a learning disability, a visual or hearing impairment, or a cognitive impairment."

There is currently no data on the impact of different forms of information on patients with limited literacy because these groups are effectively excluded from research samples. "We don't know whether audiotapes or videotapes work better than printed materials because it's never been studied," says Dr Shohet. "There's some evidence that people who don't read and write don't take oral instructions very well either, perhaps because they're missing a large amount of the vocabulary and knowledge that readers have."

Dr Irving Rootman, of the University of Victoria, is working to see these research gaps filled so that strategies can be designed to improve healthcare for less literate Canadians. In September 2003, he and Dr Barbara Ronson from the University of Toronto reviewed past efforts in the area and set out a research road map for the future. They recommended that the Canadian Institute for Health Research (CIHR), the Social Science and Humanities Research Council (SSHRC) and the Canadian Health Services Research Foundation (CHSRF) develop a joint initiative to fund both research and capacity development, to find out what strategies will work best to reduce health disparities based on health literacy. In a promising step, the CIHR recognized health literacy as a priority in its strategic plan last year.

Next on Dr Rootman's list is looking at health literacy in the context of physicians' practices to find out how low it might be. He has received CIHR funding to research measures of health literacy that go beyond reading ability. Ensuring understanding and promoting health literacy is just as much the responsibility of the system as it is the individual's, Dr Rootman believes. "Health care systems need to provide individuals with support no matter what their literacy levels."

For more information on the Health Literacy Project, visit www.nald.ca/PROVINCE/QUE/litcent/health/healthlt.htm