How to present cancer risk assessment results to patients, GPs and specialists? Co-designing a new CanRisk report

Problem

Multifactorial cancer risk prediction tools, such as CanRisk, are increasingly being incorporated into routine healthcare. Understanding risk information and communicating risk to patients can be challenging and research shows that healthcare professionals rely substantially on the outputs of risk prediction tools to communicate results to patients. This paper focuses on how to best present the results from CanRisk so people undergoing risk assessment can directly access key information, and healthcare professionals can communicate risk estimates effectively. 

Approach

Over a 13-month period, we led an 8-step co-design process with stakeholders including patients, members of the public, and healthcare professionals. Steps comprised 1) a think aloud session using an existing CanRisk report; 2) a preliminary round of structured feedback on the existing report; 3) an informal literature review; 4) prototype development; 5) first round of structured feedback; 6) updating the prototype; 7)second round of structured feedback; and 8) finalising the report.

Findings

We received 56 sets of feedback from 34 stakeholders. Overall, the original CanRisk report was not suitable for those without specialist training in genetics. Feedback helped to define the needs of users, prioritise recommendations from the literature, and guide the development and update of the prototype into the revised report.

Consequences

This co-design experience shows the value of collaboration for the successful communication of complex health information. As a result, the new CanRisk report has the potential to better support shared decision-making processes about the management of cancer risk across clinical settings.