Communicating the results of risk-based breast cancer screening through visualizations of risk: a participatory design approach

Background: Risk-based breast cancer (BC) screening raises new questions regarding information provision and risk communication. This study aimed to: 1) investigate women’s beliefs and knowledge (i.e., mental models) regarding BC risk and (risk-based) BC screening in view of implications for information development; 2) develop novel informational materials to communicate the screening result in risk-based BC screening, including risk visualizations of both quantitative and qualitative information, from a Human-Centered Design perspective. Methods: Phase 1: Interviews were conducted (n = 15, 40–50 years, 5 lower health literate) on women’s beliefs about BC risk and (risk-based) BC screening. Phase 2: In three participatory design sessions, women (n = 4–6 across sessions, 40–50 years, 2–3 lower health literate) made assignments and created and evaluated visualizations of risk information central to the screening result. Prototypes were evaluated in two additional sessions (n = 2, 54–62 years, 0–1 lower health literate). Phase 3: Experts (n = 5) and women (n = 9, 40–74 years) evaluated the resulting materials. Two other experts were consulted throughout the development process to ensure that the content of the information materials was accurate. Interviews were transcribed literally and analysed using qualitative thematic analysis, focusing on implications for information development. Notes, assignments and materials from the participatory design sessions were summarized and main themes were identified. Results: Women in both interviews and design sessions were positive about risk-based BC screening, especially because personal risk factors would be taken into account. However, they emphasized that the rationale of risk-based screening and classification into a risk category should be clearly stated and visualized, especially for higher- and lower-risk categories (which may cause anxiety or feelings of unfairness due to a lower screening frequency). Women wanted to know their personal risk, preferably visualized in an icon array, and wanted advice on risk reduction and breast self-examination. However, most risk factors were considered modifiable by women, and the risk factor breast density was not known, implying that information should emphasize that BC risk depends on multiple factors, including breast density. Conclusions: The information materials, including risk visualizations of both quantitative and qualitative information, developed from a Human-Centered Design perspective and a mental model approach, were positively evaluated by the target group.