JMIR Publications

ABSTRACT

Background:

There is no consensus on which risks to communicate to a prospective surgical patient during informed consent, nor in what manner. Complicating the process, patient preferences may diverge from clinical assumptions and are often not considered in the discussion. Such discrepancies can lead to confusion, resentment, and raise the potential for legal action. To overcome these issues, we propose a design for a visual consent tool (VCT) that incorporates patient preferences and communicates personalized risks to patients using data visualization. We use this platform to identify key effective visual elements to communicate personalized surgical risks.

Objective:

Our main focus was to understand how to best communicate personalized risks using data visualization. To contextualize patient responses to the main question, we examined how patients perceive risks before surgery, how well our visualizations conveyed personalized surgical risks, and in which scenarios VCTs could improve the informed consent process.

Methods:

We created multiple visualization mockups to communicate patient risk using visual elements that previous research determined to be well received. Semi-structured interviews were conducted with post-surgery patients and each of the mock-ups was presented and evaluated independently and in the context of our VCT design. The interviews were transcribed and thematic analysis was performed to identify major themes. Iterative evaluation and consolidation of the major themes were performed with domain experts. We also applied a quantitative approach to the analysis and extracted discourse units that expressed different visualization preferences and used them to assess the prevalence of different perceptions about the visualizations presented in our VCT.

Results:

Twenty patients were interviewed with a median age of 59 (range of 29 to 87). Thematic analysis revealed i) factors that influence the perception of risk: the surgical procedure, the cognitive capacity of the patient, and the timing of the consent; ii) factors that influence the perceived value of risk visualizations: preference for rare events communication, preference for risk visualization, and usefulness of comparison to the average, and iii) perceived usefulness of the proposed VCT. We found that patients preferred VCT over current text-based documents and had no unified preferences for risk visualization. Further, our findings suggest that surgical concerns of patients were not in line with results from existing risk calculators.

Conclusions:

We identified key elements that influence effective risk communication in the perioperative setting and the limitations of the existing calculators to address patient concerns. Patient preference is highly variable and should influence choices for risk presentation and visualization.