Communicating uncertainty in written consumer health information to the public: Parallel-group, web-based randomized controlled trial

Abstract

Background: Uncertainty is integral to evidence-informed decision making and is of particular importance for preference-sensitive decisions. Communicating uncertainty to patients and the public has long been identified as a goal in the informed and shared decision-making movement. Despite this, there is little quantitative research on how uncertainty in health information is perceived by readers. Objective: The aim of this study was to examine the impact of different uncertainty descriptions regarding the evidence for a treatment effect in a written research summary for the public. Methods: We developed 8 versions of a research summary on a fictitious drug for tinnitus with varying degrees (Q1), sources (Q2), and magnitudes of uncertainty (Q3). We recruited 2099 members of the German public from a web-based research panel. Of these, 1727 fulfilled the inclusion criteria and were randomly presented with one of these research summaries. Randomization was conducted by using a centralized computer with a random number generator. Web-based recruitment and data collection were fully automated. Participants were not aware of the purpose of the study and alternative presentations. We measured the following outcomes: Perception of the treatment effectiveness (primary), certainty in the judgement of treatment effectiveness, perception of the body of evidence, text quality, and intended decision. The outcomes were self-assessed. Results: For the primary outcome, we did not find a global effect for Q1 and Q2 (P=.25 and P=.73), but we found a global effect for Q3 (P=.048). Pairwise comparisons showed a weaker perception of treatment effectiveness for the research summary with 3 sources of uncertainty compared to the version with 2 sources of uncertainty (P=.04). Specifically, the proportion of the participants in the group with 3 sources of uncertainty that perceived the drug as possibly beneficial was 9% lower than that of the participants in the group with 2 sources of uncertainty (92/195, 47.2% vs 111/197, 56.3%, respectively). The proportion of the participants in the group with 3 sources of uncertainty that considered the drug to be of unclear benefit was 8% higher than that of the participants in the group with 2 sources of uncertainty (72/195, 36.9% vs 57/197, 28.9%, respectively). However, there was no significant difference compared to the version with 1 source of uncertainty (P=.31). We did not find any meaningful differences between the research summaries for the secondary outcomes. Conclusions: Communicating even a large magnitude of uncertainty for a treatment effect had little impact on the perceived effectiveness. Efforts to improve public understanding of research are needed to improve the understanding of evidence-based health information.