Outbreaks, trust, and public fears

Guest Post by Maria Carney

When the Nassau County Health Department was at the epicenter of the H1N1 influenza (swine flu) outbreak in 2009, a young pregnant woman died, and hospital emergency rooms were overloaded with frantically ill  individuals. The media covered the story and fed people’s anxieties. In my public role at that time, I had to address the fear of the unknown. What would happen when the illness spread? Were people going to die? How does the virus spread? How could illness and death be prevented? How were health care providers going to effectively address this outbreak without themselves getting ill? Sound familiar?

The Centers for Disease Control and Prevention worked feverishly earlier this year to address the outbreak of Ebola and limit its impact on the United States. By publishing new guidelines on how to prevent the spread of Ebola, a virus originating in West Africa with high fatality rates, the agency tried to share facts and expertise. The goal and hope is to minimize the spread and impact of the disease.

Yet despite this expert guidance, the CDC’s recommendations were questioned.

New York and New Jersey leadership announced a stricter response than what CDC put forth. A nurse fought for her right to go home prior to the completion of her (non-CDC) imposed quarantine, stating that it was a violation of her personal rights. U.S. Military personnel providing care to Ebola victims were required to participate in a mandatory quarantine upon caring for individuals with Ebola, but U.S. hospital workers caring for Ebola victims did not. While some challenged the guidelines and policies, hospitals across the nation continued to prepare for the possible spread of disease by training health care workers on how to protect themselves if they found themselves in a position to care of individuals with this highly fatal illness.

Public fears were high. A physician with Ebola died, causing concerned people to propose travel bans to and from West Africa. The anxiety was real, and the perceived confusion regarding the different mandates didn’t help to convey trust in those providing care and guidance. Today’s public fears and initial distrust of the country’s response could have been improved by initiating an intensive communication strategy based on the principles of Dr. Vincent T. Covello, director of New York’s Center for Risk Communication.

An upcoming issue of the journal Progress in Community Health Partnerships includes an article entitled “A Community Partnership to Respond to an Outbreak: A Model that can be Replicated for Future Events.” Here, the authors, of which I am one, describe a three-phase strategy based on the H1N1 influenza efforts in Nassau County, New York. We encourage public health entities to accept the community as a partner, plan carefully, listen to their audience, coordinate and collaborate with all sources, address the media, and speak clearly and with compassion. It may seem difficult for a federal government agency such as the Centers for Disease Control and Prevention to speak clearly and with compassion, but it is necessary. The public needs to know that the decisions made are based on facts as well as compassion.

The CDC communicated in various forms to the public: press conference, guidance distribution, social media. But did the CDC take input from community partners as well as they possibly could? Did an extensive two-way dialogue take place? For example, by listening and understanding to the concerns of hospital and health care worker (a high-risk population), the CDC could have used the information to formulate the implementation phase of disease prevention.

Some other strategies we learned from the H1N1 outbreak could have made a tremendous difference with the Ebola response. We recommend partnering with those most affected, as well as providing facts about the disease’s current state, how it is transmitted, when it is most virulent, and how you will minimize the spread further. Do not overpromise, and do not minimize the concerns of a patient, family member, nurse, physician, hospital or governor. As soon as possible, share your disease prevention strategy, plans, and information. Continually update your stakeholders during what will be a dynamic and extensive course. Don’t be afraid to be compassionate and show your concern. Most importantly, by doing so you are partnering with the communities who are and may be most affected by the Ebola virus disease. This is one strategy to improve trust that may have been challenged.

Maria Carney, MD, is the chief of geriatrics and palliative care at Long Island Jewish Medical Center and North Shore University Hospital. She is also an assistant professor at Hofstra North Shore–LIJ School of Medicine and previously served as the Nassau County Department of Health commissioner.