We developed iPrevent
®, a web-based decision support tool that integrates two validated risk assessment models to estimate a woman’s personal breast cancer risk and then facilitates discussions between women and their health care providers about evidence-based measures to manage that risk, by providing information tailored to each woman. We took a user-centered approach with the aim of meeting the end user’s needs as identified in our previous research [
17,
18]. We verified the coding of iPrevent
® using a population-based dataset to ensure the breast cancer risk estimates and risk management information presented were derived correctly according to our algorithm (Fig.
2; Table
1) and thus clinically appropriate. We defined an arbitrary cut-off for the verification of risk estimates of <1 % from the expected breast cancer risk (derived directly from the validated IBIS or BOADICEA model) as an acceptable variation. This definition is strict and much wider variation is likely to be acceptable in a clinical context. A variation of 1 % will only rarely change the risk category (Table
1) that a woman is assigned to and will not substantially alter the risk reduction estimates for any given risk management option. For example, for risk-reducing medication with tamoxifen a variation of 1 % in risk estimate results in a variation of only 0.67 % in the absolute risk reduction estimate, which is unlikely to influence clinical decision making.
Future features
iPrevent
® is intended to be a dynamic tool, designed to allow for the incorporation of updated data on breast cancer risk assessment and risk management without major coding changes. Anticipated future changes to breast cancer risk assessment include the incorporation of elements known to affect breast cancer risk but not currently well defined in terms of their interaction with family history and other factors modeled by IBIS and BOADICEA. For example, mammographic density is an important risk factor for breast cancer [
32], and the IBIS and BOADICEA developers are currently working on its inclusion in these models. Similarly, SNPs in multiple genes affect breast cancer risk [
33], and it is expected these will be included in these models in the future.
Integration of the iPrevent
® breast cancer risk with personally controlled health record (PCHR) platforms [
34], is also an ideal future use, allowing the risk calculation to be updated over time, with respect to changing circumstances.
While the risk reduction estimates programmed into iPrevent
® are based on the best current data, refinements are likely to occur over time. For example, iPrevent
® currently applies a 50 % relative risk reduction for breast cancer with risk-reducing salpingo-oophorectomy before 45 years of age [
23,
35]. Modeling studies [
11] have investigated this research question, but greater data are required for individualization of the risk reduction estimates. It is likely that when more prospective data are available [
36], a more accurate age-adapted risk reduction will be known and hence able to be incorporated into iPrevent
®.
Ultimately, it is envisaged that iPrevent
® will enable healthcare providers to assess and manage a woman’s breast cancer risk easily and routinely as part of a prevention consultation. The current uptake of risk-reducing interventions, even among women at highest risk, is low [
37]. iPrevent
® will empower women to know their breast cancer risk and understand the pros and cons of various interventions. It will provide users with accurate and personalized risk assessment and risk management information with the intention of improving decision making regarding risk management options.
iPrevent® may be applied to women across the spectrum of breast cancer risk, in a variety of specialist and primary care clinical settings, to provide an evidence-based approach to breast cancer risk assessment and management and to optimize shared decision making between patient and healthcare provider.
IBIS and BOADICEA are excellent breast cancer risk assessment models that have been well validated. iPrevent® provides potential advantages over either model alone, as it automatically uses the most appropriate of these models depending on the data inputted. In addition, the interface has been designed to be easier for women and inexperienced clinicians to use compared with the data input interfaces for IBIS and BOADICEA. Perhaps, the most important distinction though is that IBIS and BOADICEA provide only breast cancer risk information, whereas iPrevent® also provides evidence-based risk management options tailored to the woman’s estimated risk level. Furthermore, iPrevent® displays the absolute risk reduction that can be achieved with each risk management option for each individual woman, providing an excellent platform for informed decision making.
The aim of this project was to develop a personalized, evidence-based, risk assessment, and risk management decision support tool for breast cancer. The results of our verification study show that this goal has been achieved. We are currently undertaking a large pilot study of iPrevent® with 70 women and 20 clinicians across three different clinical settings (primary care, breast surgical clinics, and genetics clinics). The aims of this piloting work is to (i) assess the acceptability of the content, layout, and presentation of iPrevent®, and (ii) identify any issues with usability and potential barriers to implementation which can then be addressed in future iterations of the tool. We believe the user satisfaction with iPrevent® will be a key driver to its widespread use and ultimately better personalized breast cancer risk awareness for all women. It is hoped to make iPrevent® widely and freely available on the web to all healthcare providers in the near future, once piloting is complete.