Improving the communication of multifactorial cancer risk assessment results for different audiences: a co-design process

Francisca Stutzin Donoso; Tim Carver; Lorenzo Ficorella; Nichola Fennell; Antonis C Antoniou; Douglas F Easton; Marc Tischkowitz; Fiona M Walter; Juliet A Usher-Smith; Stephanie Archer

doi:10.1007/s12687-024-00729-4

Improving the communication of multifactorial cancer risk assessment results for different audiences: a co-design process

J Community Genet. 2024 Oct;15(5):499-515. doi: 10.1007/s12687-024-00729-4. Epub 2024 Sep 25.

Authors

Affiliations

¹ Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK. fsd26@medschl.cam.ac.uk.
² Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK.
³ Department of Medical Genetics, National Institute for Health Research Cambridge Biomedical Research Centre, University of Cambridge, Cambridge, UK.
⁴ Wolfson Institute of Population Health, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK.
⁵ Department of Psychology, University of Cambridge, Cambridge, UK.

Abstract

Background: Multifactorial cancer risk prediction tools, such as CanRisk, are increasingly being incorporated into routine healthcare. Understanding risk information and communicating risk is challenging and healthcare professionals rely substantially on the outputs of risk prediction tools to communicate results. This work aimed to produce a new CanRisk report so users can directly access key information and communicate risk estimates effectively.

Methods: Over a 13-month period, we led an 8-step co-design process with patients, the public, and healthcare professionals. Steps comprised 1) think aloud testing of the original CanRisk report; 2) structured feedback on the original report; 3) literature review; 4) development of a new report prototype; 5) first round of structured feedback; 6) updating the new report prototype; 7) second round of structured feedback; and 8) finalising and publishing the new CanRisk report.

Results: We received 56 sets of feedback from 34 stakeholders. Overall, the original CanRisk report was not suitable for patients and the public. Building on the feedback, the new report has an overview of the information presented: section one summarises key information for individuals; sections two and three present information for healthcare professionals in different settings. New features also include explanatory text, definitions, graphs, keys and tables to support the interpretation of the information.

Discussion: 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 cancer risk management across clinical settings.

Keywords: Breast cancer; Co-design; Multifactorial cancer risk assessment; Risk communication.

Abstract

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