At a Harvard briefing on the SARS epidemic last April, Senator Edward Kennedy credited Dr. Donna Fisher's quick diagnosis and isolation of an infant from China with helping thwart an outbreak of the disease in Massachusetts. But Fisher, a specialist in pediatric infectious diseases at the Baystate Medical Center in Springfield, Mass., demurred. No, she said, her diagnosis was not the key--SARS was stopped in its tracks by an information card.
Stepping off the plane at Logan Airport with her newly adopted baby, a Springfield woman was handed a yellow information card from the Centers for Disease Control and Prevention (CDC) about the outbreak of a serious respiratory disease in China. The card outlined the disease's symptoms, fever and persistent cough, and provided an emergency number. When her sister (who had accompanied her on the trip) and the baby both came down with fever, the woman called the hotline. Taking the appropriate precautions, the infant was examined by a pediatrician and eventually brought to Fisher who diagnosed a probable case of SARS. Both aunt and baby recovered, and they infected no one else.
The SARS epidemic has demonstrated dramatically the power of information to protect public health and the terrible consequences for any nation that hides vital health information from its citizens. Many individuals in a society must be made knowledgeable in order to promote health and prevent disease. Communication is as much an armament in this fight as a syringe or a drug--one that can be used both in times of health emergency and under more ordinary circumstances, when common, yet equally deadly, threats like flu or heart disease abound.
At the Harvard School of Public Health, projects to understand the public's mindset about health are gaining momentum. "If you dont know what people believe about epidemics and threats, you cant communicate with them--you have to know their concerns," says Professor of Health Policy and Management Robert Blendon, an expert in opinion polling who has used surveys in the political arena to track public attitudes toward health care policy. More recently, however, under the rubric of the Schools Project on the Public and Biological Security, Blendon has been surveying the state of public knowledge and attitudes about recent health emergencies such as the anthrax mailings, the resurgence of West Nile virus, the threat of smallpox and other bioterrorism, and the SARS epidemic.
His goal is to help national and local government authorities and health care providers pinpoint deficits in public knowledge and change behavior. "This effort is the first of its type to see if we can really move public health communication into the modern age," notes Blendon, "to use the techniques used by others who have to deal with informing the public, such as the fields of politics and marketing. It is part of a new effort by the School to focus on communications and research."
Blendon's surveys have turned up, for example, the fact that most Americans think smallpox is still a world health problem (it was eradicated in 1977) and do not understand that a vaccination given two or three days after smallpox exposure could still protect them against the disease. The surveys have also found that 12 percent of Americans think that the natural mosquito-borne West Nile virus was planted by terrorists. But the news isnt all bad; most Americans, they found, understand that SARS is a disease transmitted by close contact, not by casual interaction--an understanding that has prevented panic.
The health crises since the 9/11 terrorist attacks have thrown into relief the communication chasm between health authorities and the public. Says Blendon: "The public health belief is that if experts don't fully know what's causing an epidemic, then the public doesn't have any views. But it isn't that people are ignorant; it's that they hold beliefs based on other experiences, beliefs that might be wrong. You must know what their beliefs are. If public health experts were doing this right, we'd be running surveys and focus groups all the time."
As a corollary to the survey effort, Rima Rudd, senior lecturer on health education at the School, has concentrated her long-term work on gauging our society's preparedness to receive public health information and on educating health professionals in how to craft their messages with clarity and effectiveness. Though Rudd has been working in this field, dubbed "health literacy," since the 1970s, her efforts were galvanized by results from the 1992 National Adult Literacy Survey. This poll found that, while complete illiteracy was extremely low in the U.S., a very limited literacy was typical of most Americans. In fact, 40 to 44 million adults fell into the lowest level of reading proficiency.
The average American, says Rudd, can't comprehend beyond a ninth-grade reading level; whereas most health information, whether from health providers or newspaper and magazine columns, is pitched far above that mark. A recent assessment of newspapers around the country found the lowest on the reading scale was USA Today, pegged at a tenth-grade level; the Washington Post and New York Times are written at a grade 14 level. "We make these faulty assumptions that the information is out there, how come they don't know?" Rudd observes. "But the information is not out there. It is not accessible."
Rudd cites the example of the Postmaster General's Office postcard to all U.S. households regarding anthrax, asking people to report any suspicious mail. Although she found the card to be fairly good, she points out that a phrase like "notify the appropriate authorities" could have easily translated into "call the police." Consequently, it may not have had the immediacy of a more straightforward message.
Blendon observes how little is known about the public's knowledge of the most common health threats. "Never mind smallpox; what do people know about chicken pox?" he wonders. "We don't know, because we've never asked them."
"We send out a lot of messages, and we don't know what's connecting with people," says Howard Koh, who recently left his post as Massachusetts commissioner of public health to join the School's faculty as director of the Division of Public Health Practice. Even experts dont know what people understand about health issues and their personal risk, he says, pointing out that when public attention is focused on health it's usually about terrifying new infectious diseases like SARS or potential terrorist acts like anthrax. "Wheres all the discussion on the big, preventable killers like heart disease and cancer?" Koh asks. "Tobacco has gone up and down in terms of its public visibility; now it seems it's off the radar screen. That's the thing that's killing people day in and day out."
Koh is an expert in the lethal but preventable skin cancer melanoma. He cites a rare national survey he piloted ten years ago asking the simple question: "Do you know what melanoma is?" He says he'll never forget the sobering results. A third of people surveyed knew it was a form of skin cancer, and another 20 percent knew it was some kind of cancer, although not what organ it involved. But the rest, a whopping 50 percent, had no idea what it was. "There are some fundamental and basic communication and education challenges," says Koh, "and we don't even know where we are because no one's taken the polls."
Rudd argues that the key to clear communication and behavior change is to involve the target audience in the original formation of the messages--as is routinely done in the advertising and marketing fields. "One of the mistakes we have made in health communication is we have had experts forge messages for the public," she says. "Now if they were following good, rigorous research protocols all along, they would carefully pilot test those messages and materials with the target audience. Even better would be to work directly with people in the very crafting of the messages."
Rudd notes that the lack of pilot testing was evident in the advice given last year by Homeland Security Chief Tom Ridge urging people to buy plastic sheeting and duct tape to secure their homes in the event of an air release of a biological agent. That advice both spurred a run on duct tape and a run of jokes from late night talk show hosts. "The explanation was not sufficient, it was not clear," says Rudd. "It was not clearly stated that your family could become asphyxiated over time if they are living in a room that has no access to air. It was incomplete communication presented to a fearful and loyal public eager to follow advice. That was awful."
Polling from the School shows that it is vital for messages to come from the right source in order to be credible. In one Blendon survey, the public indicated that it wanted to hear advice only from health professionals during a health crisis, not from politicians as was the case during the anthrax mailings. Then, the Department of Health and Human Services Secretary and various Congressmen were found before the microphones rather than the director of the CDC or the U.S. Surgeon General.
The administration seems to have learned a lesson. During the SARS epidemic, CDC Director Julie Gerberding was the most visible government figure, offering frequent press briefings and advice to professionals through Webcasts. Doctors, hospital personnel, and the public were alerted and kept well informed. Six weeks after SARS was named and recognized, a Blendon poll found that more than 90 percent of the U.S. public had heard of the disease and knew it was contagious.
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