Table 4. Summary of changes made to the prototype CanRisk tool.
Area of concern | Setting | Changes made to later version |
---|---|---|
Differences in practice between the two settings | Both | The tool has now been split into a CanRisk Genetics version for use in the specialist genetics setting and a CanRisk Core version for use in primary care. |
Lack of approval from regulatory body | Both | The final version of the tool will carry CE marking. |
Lack of information on how to manage the risk | Primary care | CanRisk Core will include better signposting to relevant management options and provide links to relevant parts of the NICE guidance. |
Difficult questions leading to discomfort (e.g. pregnancy and baby loss) or judgement (e.g. breastfeeding, alcohol intake and weight) | Both | Questions collecting data on factors that do not currently contribute to the risk model have been removed. A description of why other data are collected has been included in the FAQs. |
Completing a detailed family history | Primary care | Collection of a limited family history (i.e. first/second degree relatives) will be required for CanRisk Core. |
Lack of information about how the data required for the calculation were to be used and stored | Both | Enhanced information on the privacy policy has been included at registration. An additional embedded webpage called Privacy and Cookies has also been included with detailed information. |
Need for training to use the tool effectively | Both | Following registration, users are taken to a quick start guide to familiarise themselves with the main functionality of the tool. In addition, an updated and searchable section of Frequently Asked Questions has been included. |
Further training on genetic risk communication | Primary Care | The CanRisk Core version of the tool will include refined risk communication formats, enabling easier interpretation in the time-limited environment. |