Using Formative Research to Improve Communication about Lyme Disease

Background:  Lyme disease is the most commonly reported vector-borne illness in the United States.   While preventive strategies have been identified, many Americans have not adopted them.  Although effective antibiotic treatments have been established for Lyme disease, misconceptions surrounding laboratory tests and debate over the diagnosis and treatment of “chronic” Lyme disease may confuse individuals seeking information. The public needs clear guidance that can provide them with the best information available to make informed decisions about the prevention and treatment of Lyme disease.

Program background: The Centers for Disease Control and Prevention (CDC), working with Research Triangle International (RTI), engaged in planning activities to improve its Lyme disease communication efforts.  Specific goals were to:  (1) Clarify misunderstandings/correct misinformation; (2) Provide accurate and understandable information regarding diagnosis and treatment to help guide decision-making; and (3) Provide people who are suffering with tools for discernment or tips for evaluating information on Lyme disease.  

Evaluation Methods and Results: Five main activities have been completed to date:  (1) a communication landscape audit; (2) literature review; (3) formative research; (4) message development; and (5) message testing. Formative research was conducted to explore the public’s knowledge, beliefs, and information sources regarding Lyme disease. Three focus groups and 21 in-depth interviews were held among people with uncomplicated cases of Lyme disease, and patients who self-describe as having “chronic” Lyme disease. Half of each audience segment was asked about their experiences; the other half was asked about information sources that were useful to them in the course of their disease. Participants provided very rich data on information gaps and needs of patients with both uncomplicated and challenging cases of Lyme disease. Taken altogether, the findings from the literature review, communication landscape audit, and formative research elucidated a number of communication challenges that must be considered to effectively communicate about Lyme disease and offered guiding principles for message development.  Key principles included the need for messages to: clarify many of the current points of confusion using two-sided messaging; treat patients with empathy and understanding that there is much variation in the experience of the disease; express scientific uncertainties; use personal stories and plain language principles; and provide patients with actionable recommendations that facilitate engagement and evaluation of the information in ways that allow for personal understanding and meaning.  The principles were used to develop message concepts and specific messages for three audience segments over two rounds of message testing.   This research led to refinement of messages and offered insights for message placement. 

Conclusions:

Activities provided rich detail on the communication environment around Lyme disease. Identifying a number of communication challenges, goals, and target outcomes for CDC’s Lyme disease communication efforts yielded specific guiding principles for communication. The guiding principles were used to develop message concepts and specific messages.

Implications for research and/or practice: Scanning the environment, conducting audience research, and applying communication theory are important practices for developing effective messages.