Table 3 Overview of methods and results of Phases 2 and 3—Participatory design sessions and user-tests
Elements, participants, and researchers | Objective | Method | Results and key insights |
|---|---|---|---|
Phase 2 – Participatory design sessions | |||
 Session 1 Women aged 40–48 who had not yet been invited for BC screening (n = 4) Researchers (HB, OD, LS) | To gain insight into women’s expectations and feelings regarding the current population-based BC screening | Elicitation of women’s goals, expectations and feelings regarding the different steps in the current BC screening program by using a timeline method | • Invitation does not automatically lead to interest • Difference between inviting to participate and informing about the possibility of participation • Important to know what to expect (screening procedure and result) to reduce tension |
To gain insight into women’s expectations and feelings regarding risk-based BC screening | Elicitation of women’s ideas and expectations that the new risk-based BC screening evokes by using the 5W1H method (i.e., who, what, why, where, when, and how questions) | • More effective and cost-effective with earlier detection in the case of higher than medium risk • Awareness of risk factors, especially lifestyle • Can cause anxiety or false reassurance | |
To investigate the information needs regarding risk-based BC screening and how information about risk-based BC screening should be presented | Generating ideas using H2s (i.e. how to …) for the communication of risk-based screening and creating and pitching a poster with a concept for how this information can be presented | • Personal and cordial tone • Advice on how to reduce risk • Terminology should be unambiguous • Explanation of what the risk categories entail • Words and visualizations • Color choice is important and should match the severity • Use of recognizable symbol • Logo to indicate reliability of information source • Preference for receiving a letter, potential additional information online • Possibility to get in touch with someone (e.g., phone, chat) • Personal contact with GP in the case of abnormality • To stimulate participation, choosing your screening location and time is important | |
 Session 2 Women aged 40–50 who had not yet been invited for BC screening (n = 6) Researchers (HB, OD, LS) | To gain insight into women’s perceptions of the benefits and potential harms of risk-based BC screening | Individual reflection followed by a group discussion on the benefits and potential harms | Benefits: • More personal • More targeted and cost-effective • Higher participation rate • Researchers can do more research Potential harms: • Anxiety, especially when at high risk • Classification in wrong risk category • Women are pigeonholed • Pressure to live healthier • Too little screening for those at low risk |
To understand the thoughts and values underlying the benefits and potential harms of risk-based BC screening | Using the ladder of abstraction method (i.e., method of moving from concrete to more underlying concepts) to further explore the mentioned benefits and potential harms | • Trust in the classification into risk categories • Anxiety plays a role in information provision; it is important to only receive relevant information | |
To examine women’s responses and suggestions for improvement to (draft) risk visualization prototypes | Individual evaluation and redesign of four risk visualization prototypes, followed by a group discussion | • Overview, for example through a flowchart • Important not to have to search for the core of information • Information from general to specific • Layered information • Rationale behind the risk category classification • Advice on modifiable risk factors • Consistency regarding how numbers are displayed • Too much information and too many numbers (e.g., about the other risk categories) creates confusion • Icon arrays are clear • Pictograms must be unambiguous • Visualizations must add value | |
 Session 3 Women aged 40–50 who had not yet been invited for BC screening (n = 6) Researchers (HB, OD, LS) | To gain insight into women’s interpretation of different (draft) risk visualizations | Explaining the meaning of six different (draft) risk visualizations | • Different colors to indicate different risk categories is clear • Abstraction in female images is important, otherwise meaning is given to irrelevant details (e.g., breast shape) • Detailed numeric information about BC screening reliability (false positives and negatives) is perceived as too much information • Information about all risk categories causes confusion, anxiety, and preference for an MRI |
To formulate ideas about how women would visualize complex risk information themselves | Designing three risk visualizations based on three textual messages | • Pictograms are helpful to indicate risk factors • It is important to know which risk factors can be influenced • Keep it as simple as possible, preferably only presenting risks from own risk category • Unambiguous information, do not display confidence intervals | |
 Session 4 Women aged 54–57 who had already participated in BC screening, but without any breast abnormalities (n = 2) Researchers (HB, OD, LS) | To investigate how women who had already participated in the current BC screening program perceive the (draft) risk visualizations | Explaining the meaning of the (draft) risk visualizations resulting from the first three participatory design sessions and evaluating them | • The colors used to indicate different risk categories must differ sufficiently from each other • Explanation of why someone is classified in a certain risk category is important • What the screening interval entails must be clearly explained • Clear explanation of the influence of risk factors is needed • More abstraction is needed in the female images to avoid giving meaning to irrelevant details • Icon arrays are clear • Information about false positives and false negatives is difficult to understand and seems to be irrelevant |
To understand why women need certain information about risk-based BC screening | Exploring underlying goals and values through the ladder of abstraction method (i.e., method of moving from concrete concepts to more underlying ones) | • Being well-informed about screening reduces uncertainty and increases motivation to participate • Stress and fear can be reasons not to participate | |
 Session 5 Women aged 54–62 who had already participated in BC screening and were diagnosed with breast abnormalities (n = 2) Researchers (HB, OD, LS) | To investigate how women who had already participated in the current BC screening program and who were diagnosed with breast abnormalities perceive the (draft) risk visualizations | Explaining the meaning of the (draft) risk visualizations resulting from the first three participatory design sessions and evaluating them | • Information about risk factors can lead to blaming those who are at high risk/have abnormalities • Importance of explaining why someone is classified in a certain risk category and whether this risk category always remains the same • Icon arrays are clear • Prevent information overload, for example, how many women are in a certain risk category in the Netherlands is not relevant for most women • Information about false positives and false negatives can be difficult for those with lower HL • Information about breast self-examination is important • Layered information is important |
To understand why women need certain information about risk-based BC screening | Exploring underlying goals and values through the ladder of abstraction method (i.e., method of moving from concrete concepts to more underlying ones) | • Understanding the harms and benefits of screening enables you to make a well-informed choice on your own • Unfamiliarity can lead to fear • Self-efficacy and having control are important in relation to your health | |
Phase 3 – User-tests | |||
 User-tests Women aged 40–74 (n = 9) Researchers (LS, OD) | To examine how the informational materials, including the risk visualizations, resulting from the participatory design sessions are perceived by women | Verbalization of women’s thoughts as they viewed a prototype of the risk-based BC screening informational material | • Risk visualizations can help to see the most important information at a glance • Some pictograms were not clear (e.g., endocrine system and breast density) • Flowchart of the different screening intervals of the different risk categories creates an overview but should be made clearer • Absolute risks of the risk categories are experienced differently • Using metaphors is confusing • Information about breast self-examination is important • Emphasize that risk-based BC screening is based not only on a mammogram, but also on a questionnaire • It should be clear that the high-risk category has an increased risk and that it is not certain that they will get BC • Breast density is an unfamiliar risk factor and must be clearly explained • Indicating reliability of BC screening is fair |