"Moving forward with health risk – benefit communications"

Current risk communications practices for written patient information, such as leaflets and package inserts, are almost unanimously recognized as suboptimal. They are usually shown to be user-unfriendly, and as failing to... [ view full abstract ]

Current risk communications practices for written patient information, such as leaflets and package inserts, are almost unanimously recognized as suboptimal. They are usually shown to be user-unfriendly, and as failing to transcribe appropriately the risks and benefits associated with the treatment.
Yet, patients have “a right to understand the benefits and risks of any treatment and to choose and act accordingly” (Bahri, 2010). Beyond the ethical necessity, good information is essential for patients to make sound choices (Fischhoff et al., 2011).
In this context, our research aims to determine the key factors of success and failures of current written patient communications practices, in order to contribute to their improvement.
To do so, we proceed in two steps. First, we build on a thorough literature review of research carried out over the past ten years in the medical and risk communication fields. We aim to identify work that sheds light on the shortcomings of current communications practices, and to learn about the main initiatives that have been imagined to improve these communications. Building on the success factors thus identified, we carry out a qualitative study to test a communication format for a new drug.
The format we test is inspired by the Drug Facts Box. Developed by Schwartz and Woloshin (e.g. 2011, 2013), it is the most comprehensive and effective written patient communication format developed to date. Drug facts boxes offer an alternative method to present the risk and benefit information associated with prescription drugs, in a manner similar to nutrition labels. They offer a 1-page summary of each indication of a drug, that includes descriptive (e.g. the drug’s indication) and quantitative information. Key success factors of the Drug Facts Box include clear statistical information, which indicates absolute risks of various outcomes with and without the drug; and standardization of the format, which makes it easier to identify relevant information.
We apply the model to a new drug, and conduct 15 interviews and 9 focus groups to test it. As a result, we expect to better understand the reasons why this format corresponds to patients’ needs and expectations, and possibly help refine it. More broadly, we also point to some of the improvements that patient risk communication should undertake to be more effective, related to the communication of uncertainty, personalisation of information and evaluation of communication.