Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Nov 8, 2019
Open Peer Review Period: Nov 8, 2019 - Jan 3, 2020
Date Accepted: Jun 21, 2020
(closed for review but you can still tweet)
Communicating Uncertainty in Written Consumer Health Information to the Public: a 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 tinnitus drug 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 a centralized computer using 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; intended decision. Outcomes were self-assessed.
Results:
We did not find a global effect for Q1 and Q2 (p=.25 and p=.73), but for Q3 (p=.048). Pairwise comparisons showed a weaker perception of the treatment effectiveness for the research summary with 3 sources of uncertainty compared to a version with 2 sources of uncertainty (p=.037). Specifically, 9% less participants perceived the tinnitus drug as possibly beneficial, while 8% more considered it to be of unclear benefit in the group with 3 sources of uncertainty. There was no difference compared to a version with 1 source of uncertainty (p=.31), however. 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 perceived effectiveness. Efforts to improve public understanding of research are needed to improve understanding of evidence based health information. Clinical Trial: German Clinical Trials Register DRKS00015911, https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00015911
Citation
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