Information tailoring for effective risk communication: Analysing contexts of use of the Digital Counselling System iKNOW for Familial Breast & Ovarian Cancer
TimeWednesday, April 143:50pm - 4:10pm EDT
Women who have been diagnosed with a BRCA 1/2 genetic mutation face a number of potentially life-altering decisions due to an increased risk to develop breast and/or ovarian cancer, including the removal of the breast and/or the ovaries. Previous studies in this context have shown that risk communication, counselling, and decision making about genetic risks may not always result in accurate risk understanding (Speiser et al., 2019). The study showed that, although some women underestimated their risks, most women tended to overestimate their 10-year risk to develop cancer after counselling, which may result in unnecessary prophylactic surgeries (i.e. overprevention) . Especially changes in risk over the life span or the combination of multiple risks seem to be exceptionally difficult to grasp for the affected persons, but essential to make informed decisions.
The online-based, interactive counselling system iKNOW aims to remedy this problem by supporting the counselling process in two ways: First, iKNOW supports physicians during the counselling session by providing a patient’s individual risks estimates in easy-to-understand risk formats, the preventive measures available for this patient, and up-to-date evidence-based information on familial breast cancer to provide patients with the necessary knowledge for informed decision-making.
Second, the tool is conceptualized as an individualized information repository for each patient to be accessed anytime after the counselling session: With a secure personal login, each patient can access and review her individualized risk profile and other information identified as relevant for her during the counselling session.
The present research aims to clarify how iKNOW enables, structures, and therefore supports a specific process of information tailoring for women with a BRCA 1/2 genetic mutation. In the following, we specifically elaborate on iKNOW’s contexts of use during the counselling sessions (1 & 2) and later by the individual patients at home (3).
The findings are based on a qualitative evaluation study of the iKNOW counselling tool between February and December 2020. We conducted ethnographic in-situ observations of 16 counselling sessions (each between 25-50 minutes long) and 16 qualitative interviews with patients and consulting physicians (each between 35-60 minutes long). The data were analysed using Grounded Theory Methodology, digitally supported by MAXQDA software, to explore how iKNOW impacts the information tailoring process.
Our results illustrate that information tailoring of and within iKNOW appears central in three contexts of use: 1) detailing of the individual patient’s risk situation by the physician during the counselling session, 2) joint customization of information and risk management strategies during the counselling session, and 3) at the patient’s home after the counselling session. The data suggest that effective human-computer interaction is essential to the counselling success, both during the session where physicians use iKNOW to explain and interpret information to patients and after the session where counselees require guidance for how/when to use iKNOW at home. In general, physicians’ verbal explanations of the information and explicit commenting on the actions performed with iKNOW were key in the information tailoring process.
(1) detailing of the individual patient’s risk situation
Prior to the counselling session, data on the patient and her genetic family tree are gathered and fed into iKNOW to create individual risk assessments and visualizations of these risks. In the counselling session, physicians and patient review together the previously entered information using a family tree representation on the iKNOW computer screen. This joint review helps physicians to ground the patient’s understanding of their risk figures in their personal and family situation. Once the data have been confirmed, iKNOW is used to display individual risks in three complementary formats: Curves, absolute numbers, and icon arrays, each showing individual risks at present and how they change in the next 5 years, 10 years, and over the patient’s lifetime. These representations triggered immediate reactions and interpretations to which physicians responded by contextualizing, explaining, and detailing the displayed risk data with respect to the patient’s core risk issues and decision-making points.
(2) joint customization of contents
The information provided in iKNOW covers a wide array of information needs in different life situations. Based on the results of step (1) of the counselling session, the available collection of contents is jointly compiled in a participatory step-by-step selection of contents relevant to the patient. This resulted in a tailormade selection of the tool’s content where patient and physician decide together which contents of the counselling tool (e.g., information on preventive operations and/or family planning) are discussed during the session and, by doing so, also unlocked for the patients to access anytime after the session with their personal login.
(3) Patient engagement with iKNOW at home
BRCA 1/2 mutation carriers often require long-term care and prevention activities. To support patient engagement and information needs over time, iKNOW thus allows patients to access information anytime after counselling to help them structure mid- and long- term care pathways. In the interviews, the patients´ reaction to iKNOW was predominantly positive and enthusiastic about the well-targeted, individualized information that iKNOW makes conveniently available to rehearse, discuss, and share with others. Concerning support for the mid- and long-term patient engagement, however, clear patterns of use could not yet be identified by the time we conducted the interviews (2-3 weeks after the counselling session). Most patients did not access iKNOW apart from occasionally looking up contact details to book follow-up appointments.
iKNOW and its specific contexts of use described in points 1-3 open possibilities for successful human-computer interaction and patient engagement with the tool, in particular with respect to individualized but structured risk communication during the counselling session. Especially the representation of individual risks over time in a curve (point 1) was assessed by most patients as helpful to get an intuitive grasp of the risk at hand. Also, physicians emphasized that iKNOW facilitates the explanation of risks, such as the difference (and especially combination) of a genetic risk and the risk of an already existing cancer disease to recur.
The joint selection and moderated review of information contents during the counselling session (point 2) emerged as another important point regarding the importance of effective human-computer interaction and a tailormade counselling process based on iKNOW. To physicians the tool offers a “structuring red thread” throughout the counselling session so that they can concentrate on selecting, communicating, and explaining relevant topics to their patients. Conversely, iKNOW allows patients to focus on their concerns and questions of interest without having to fear that they forget or miss important information during the counselling, because they can always re-access information on iKNOW again later and with more time at home.
Regarding patient’s ongoing engagement with iKNOW at home (point 3) it remains unclear whether the perceived advantage lies primarily in the fact that they may re-access all information: Most patients in our study reported that they have not used or accessed iKNOW within a two to three-week period after the counselling process.
Overall, iKNOW as a digital counselling tool supports risk communication and empowers patients with BRCA1/2 mutation to make more informed decision-making. In particular, iKNOW supports information tailoring and promotes patient-doctor interactions and patient engagement across multiple but not all contexts of use. Further research into how counselling tools such as iKNOW are or may be used after counselling at patient’s homes is required to develop suggestions for how such tools may be used to better support and engage patients in need of mid and long-term care. A focus of analysis should then also be whether and how increased patient empowerment may also alter patients’ perceived responsibility for medical decision-making processes.