Online Patient Education and Risk Assessment: project OPERA from Cancerbackup: Putting inherited breast cancer risk information into context using argumentation theory

Abstract

Objective Many people are concerned about their family history of breast cancer, and are anxious about the possibility of developing breast cancer themselves. The majority of these people are likely not to be at significantly increased risk of developing inherited breast cancer. All women are at risk of developing sporadic breast cancer, and this risk increases with age. This project aims to aid people's understanding of these issues using an interactive online computer programme. Methods The UK National Institute of Health and Clinical Excellence has published guidance for the National Health Service on the management of familial breast cancer. That guidance lays down clear criteria for categorising risk level and the appropriate management options. We have developed a user-friendly computer programme named OPERA (online patient education and risk assessment) which captures the individuality of the user's situation in a comprehensive way, and then produces personalised information packages, building on the theoretical framework of argumentation developed by Toulmin [Toulmin S. The uses of argument. Cambridge, MA: Cambridge University Press; 1958]. We will test this programme in a series of pilot studies commencing in 2007. Results This paper describes the progress of this project to date and focuses on the design of the programme. Conclusion It is possible to construct a user friendly programme which delivers a personalised information package to individuals who are concerned about their risk of developing breast cancer. Practice implications This user friendly programme needs to be tested within a series of carefully thought out pilot studies before it is ready for general release and use by the public.