Design Thinking in Healthcare: Developing Patient-Centred Communication Materials for Breast Cancer Detection A thesis submitted for the degree of Doctor of Philosophy by Corrine Ellsworth Beaumont, MFA School of Design, Craft & Visual Arts Faculty of Design, Media & Management Buckinghamshire New University Brunel University June 2011 Design Thinking & Breast Cancer: Visualising a Patient-centred Detection Process For Grandma Kohntopp, Grandma Beth and Suzanne Abstract ? ? ? ? ? ? ? Acknowledgements Author?s Declaration Table of Contents List of Figures Note: Unless otherwise stated, images are by the author, Corrine Beaumont. Chapter 1 (no figures) Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7 Chapter 8 1. Introduction Chapter One: Introduction 2 [1.1] Overview of research aims and objectives Research aim To advance understanding of the information, knowledge, skills, methodology and values deployed by graphic designers and health educators when making decisions, particularly on health communication materials such as with the topic of breast cancer detection Key audiences Breast Cancer Health Educators Breast Health Providers & Organisations Graphic Designers Design Educators Design Researchers Breast Cancer Screening Patients (not patients who have been diagnosed) Purposes of design projects To illustrate the development of communication concepts as part of design and research activity To have a set of communications to test with small audiences To document the design journey, and visually articulate proposed solutions to problems discovered in the research To reveal and understand practical problems that would not present themselves in theoretical situations Contribution to design portfolio Guidelines for international communication for breast screening visuals A set of printed materials (posters and a leaflet) to illustrate the guidelines A fully functional prototype of a breast screening website Additional sources of primary data Interviews with health educators, health practitioners, patients and oncologists Surveys on breast cancer awareness and public interpretation of design work Personal experiences of the screening process Testing of prototypes with users Pilot studies of groups from different parts of the world using the materials developed in this thesis Chapter One: Introduction 3 [1.2] Background to the research project Chapter One: Introduction 4 Chapter One: Introduction 5 [1.3] Unique contributions to research ? ? ? Chapter One: Introduction 6 [1.4] Working definitions of design for this thesis Chapter One: Introduction 7 Chapter One: Introduction 8 [1.5] Overview of research methods used Chapter One: Introduction 9 Chapter One: Introduction 10 [1.6] Ethics 7. Chapter One: Introduction 11 [1.7] Format of the literature review Chapter One: Introduction 12 [1.8] Limitation of the research [1.9] Thesis structure and chapters in brief Chapter One: Introduction 13 2. Literature Review: Breast Cancer Detection and Communication in Context Chapter Two: Literature Review & Context 15 [2.1] Worldwide Context of Breast Cancer and Urgency for Detection and Education Figure 2.1. The number of new breast cancer cases occurring worldwide, per 100,000 persons (year 2000 estimate). This map illustrates the rates of breast cancer worldwide. Countries in pink have the highest incidence rates, which include the USA, Canada, and the UK. Based on a diagram by (Ferlay, Bray, Pisani, & Parkin, 2001). Illustration by Author. Chapter Two: Literature Review & Context 16 ? ? STATISTICS OF BREAST CANCER (PER-DAY) Table 2.1. Statistics of breast cancer on a per-day basis show how breast cancer deaths could be decreased through screening and education programmes (American Cancer Society, 2009; CRUK, May 2009; NCI, 2009; WHO, 2009). Chapter Two: Literature Review & Context 17 Figure 2.2. The survival rate of breast cancer is determined according to its stage at diagnosis. This chart shows the detection rates for each stage, and its corresponding survival rate for that stage. This chart is based on information from the National Cancer Institute Report (NCI, 2009). Illustration by Author. Chapter Two: Literature Review & Context 18 [2.2] Health Literacy and Patient Engagement Chapter Two: Literature Review & Context 19 [2.3] Literacy Impact on Engagement in Breast Cancer Screening [2.3.1] Patient-practioner communication Chapter Two: Literature Review & Context 20 Chapter Two: Literature Review & Context 21 Chapter Two: Literature Review & Context 22 Chapter Two: Literature Review & Context 23 [2.4] Connection between Literacy, Engagement and Design [2.4.1] Literature review on the design of communication aids in healthcare Chapter Two: Literature Review & Context 24 [2.4.1.1] Studies on visuals in patient materials Chapter Two: Literature Review & Context 25 Chapter Two: Literature Review & Context 26 [2.4.1.2] Houts study on visuals and patient recall Chapter Two: Literature Review & Context 27 Figure 2.3. 'Examples of simple and complex pictographs' (Houts, Witmer, Egeth, Loscalzo, & Zabora, 2001, p. 238). These figures show the different types of pictographs categorised by Houts et al, according to complexity of the message, rather than their visual complexity. Chapter Two: Literature Review & Context 28 Figure 2.4. This is an example of visuals that are categorised by their visual complexity or simplicity. The image on the left is from the Houts study, the image on the right is from the AIGA International Symbols set (http://www.aiga.org/content.cfm/symbol-signs). Chapter Two: Literature Review & Context 29 Chapter Two: Literature Review & Context 30 [2.4.2] Information prescriptions Chapter Two: Literature Review & Context 31 [2.4.2.1] SPARC innovation program Chapter Two: Literature Review & Context 32 Figure 2.5. SPARC designers work with clinicians and patients to develop iterative prototypes for patient engagement (Salter, 2006). Chapter Two: Literature Review & Context 33 Chapter Two: Literature Review & Context 34 Figure 2.6. First iteration of SPARC decision aid. The metformin card shown as an example of the ?baseball card? prototype. The full set of cards included one card for each medication (Breslin, Mullana, & Montori, 2008, p. 467). Chapter Two: Literature Review & Context 35 Figure 2.7. Second iteration of SPARC decision aid. The metformin card is shown as an example of the ?narrative card? prototype. The full set of cards included one for each medication (Breslin, Mullana, & Montori, 2008, p. 468). Visuals were not included in the early versions of the decision aid. Chapter Two: Literature Review & Context 36 Figure 2.8. The SPARC cards were designed to stack in the user?s hand, making it easier for patients to understand their options in a way that unfolded to new levels of detail, rather than be presented all at once (Breslin, Mullana, & Montori, 2008). Chapter Two: Literature Review & Context 37 Figure 2.9. A patient holds the discussion aid during a conversation with her physician (Mayo Research KER Unit, 2009). Figure 2.10. When the SPARC cards were arranged horizontally, it made it visually simple to compare the pros and cons of medication, as well as prioritise what factors were most important for them (Breslin, Mullana, & Montori, 2008). Chapter Two: Literature Review & Context 38 Figure 2.11. This final set of cards were designed by SPARC to help patients discuss and decide treatment plans with their physician, and include various visual techniques for explaining the side- effects (Breslin, Mullana, & Montori, 2008). Chapter Two: Literature Review & Context 39 Chapter Two: Literature Review & Context 40 [2.5] Summary 3. Methodology: A Design Thinking Process and Systems Analysis Framework Chapter Three: Methodology 42 [3.1] ?Design Thinking? as a Methodological Framework [3.1.1] Definitions and aims of design thinking ? ? ? Chapter Three: Methodology 43 Chapter Three: Methodology 44 SCIENTIFIC, SYSTEMS AND DESIGN THINKING COMPARISONS Table 3.1. This table compares the differences between scientific, systems and design thinking which are explored in this thesis (Kach, Azadegan, & Chethan, 2009, p. 18). Chapter Three: Methodology 45 [3.1.2] Summary ? ? ? Chapter Three: Methodology 46 [3.2] Human Centred Design Methods [3.2.1] Definitions of human centred design [3.2.2] Literature review of HCD methods Chapter Three: Methodology 47 [3.2.3] Democratic design methods Chapter Three: Methodology 48 [3.2.3.1] Democratic method: ?design by proxy? Chapter Three: Methodology 49 Figure 3.1 Sketches for an HIV Kenya campaign drawn by non-design participants (left, middle) and refined by American designers (right). This method of HCD asks non-designers to come up with design concepts for a campaign that a professional designer refines into a final poster (Bennett, Krishnamoorthy, Eglash, & Rarieya, 2006, pp. 194-195). Chapter Three: Methodology 50 Figure 3.2. 'An Easy Guide to Breast Screening' produced by patients with learning disabilities and the Royal College of Psychiatrists was developed using a design by proxy HDC method. Here a woman is shown on the cover proudly standing in her underwear?which is not an accurate depiction of the breast screening experience (Department of Health: NHS, 2006). Chapter Three: Methodology 51 Figure 3.3. The images used in this NHS guide may be appropriate for an audience with learning disabilities but the images may not be appropriate for a general audience (Department of Health: NHS, 2006). Chapter Three: Methodology 52 [3.2.3.2] Democratic method: ?design by collaboration? Chapter Three: Methodology 53 [3.2.3.3] Democratic method: ?design by co-ownership? Chapter Three: Methodology 54 [3.2.3.4] Why is Democratic Design Needed? Chapter Three: Methodology 55 [3.2.3.5] Weakness of Democratic Design Methods Chapter Three: Methodology 56 [3.2.4] Empathic design methods Chapter Three: Methodology 57 Figure 3.4. Three levels of patient empathy for research are based on cognitive, emotional and physical needs, Based on a drawing by Tim Brown (Brown, Innovation through Design Thinking, 2006). Illustration by Author. [3.2.4.1] Cognitive Empathy Chapter Three: Methodology 58 [3.2.4.2] Emotional Empathy [3.2.4.3] Physical Empathy Chapter Three: Methodology 59 [3.2.4.4] Example of Empathy at Work [3.2.4.5] Why is Empathic Design Needed? Chapter Three: Methodology 60 [3.2.4.6] Weaknesses of Empathic Design Methods Chapter Three: Methodology 61 [3.2.5] Summary and conclusion Chapter Three: Methodology 62 [3.3] Establishing a Design Thinking Methodology [3.3.1] A literature review of current design thinking models Chapter Three: Methodology 63 ? Chapter Three: Methodology 64 ? ? ? ? ? [3.4] Review of Design Thinking Models Chapter Three: Methodology 65 Figure 3.5. These three units of analysis were used to organise the research of design thinking models. [3.4.1] Overview of models Figure 3.6.This figure compares six design thinking models according to activities, stages and phases. The strengths from each model were combined to create a new model under a new terminology. For those categories that were left blank above, it was because the models did not clearly state specific activities, stages or phases in the explanations of their models. Illustration by Author. Chapter Three: Methodology 66 [3.4.1.1] IDEO Model Figure 3.7. IDEO?s design thinking phases increased in synthesis as a project progresses (Brown, Innovation through Design Thinking, 2006). Chapter Three: Methodology 67 Figure 3.8. IDEO?s stages and activities of design thinking. (Brown, Innovation through Design Thinking, 2006, 15:44). Chapter Three: Methodology 68 Figure 3.9. According to Brown, social, cultural, cognitive, emotional and physical factors need to be understood in order to be successful (Brown, Innovation through Design Thinking, 2006, 21:00). Chapter Three: Methodology 69 [3.4.1.2] Stanford University D.School model Figure 3.10. Stanford D.school views the design thinking process as an iterative cycle of empathy, definition, ideation, prototyping and testing (Kembel, Awakening Creativity 2009). Chapter Three: Methodology 70 [3.4.1.3] SPARC Model Chapter Three: Methodology 71 [3.4.1.4] Design Council model Figure 3.11. The ?double diamond? design process model by the Design Council is a series of diverging and converging activities that include ?discover?, ?define?, ?develop? and ?deliver? stages (Design Council, Eleven Lessons: Managing design in eleven global companies, 2007). Chapter Three: Methodology 72 ? ? ? ? ? ? ? ? ? ? ? ? ? Chapter Three: Methodology 73 [3.4.1.5] AIGA model Figure 3.12. AIGA ?Design for Success? was arranged into 12 stages that were contained within three phases: ?defining? (1-4), ?innovating? (5-8) and ?generating value? (9-12). Chapter Three: Methodology 74 [3.4.1.6] Barry and Beckman model Figure 3.13. Barry and Beckman viewed design thinking as problem and solution finding and selecting (Barry, Michael; Beckman, Sara L., Developing Design Thinking Capabilities,, 2008). Chapter Three: Methodology 75 Table 3.2. Barry and Beckman's design thinking process model organised according to category, goal and type. Chapter Three: Methodology 76 [3.4.1.7] Design thinking models?a comparison on reflection Chapter Three: Methodology 77 [3.4.2] Building a new design thinking model Chapter Three: Methodology 78 Chapter Three: Methodology 79 Figure 3.14. Diagram of the USER model, which organises design thinking and design producing activities according to problem or solution stages, abstract and concrete stages, and analysis and synthesis stages. Typically, after an issue has been identified for investigation, the model would begin with the User stage and then cycle through to the Realise stage. However, it?s not anticipated that it would occur in an orderly, regimented fashion, rather it would progress between problem and solution halves according to the project needs. (Illustration by Author) Chapter Three: Methodology 80 Chapter Three: Methodology 81 Figure 3.15. This figure illustrates how various authors and models were combined to create the USER model. (Illustration by Author) Chapter Three: Methodology 82 Figure 3.16. Description of the USER model. (Illustration by Author) Chapter Three: Methodology 83 [3.5] Developing a Systems Framework for Design Thinking [3.5.1] A framework for analysing health care systems Chapter Three: Methodology 84 Chapter Three: Methodology 85 [3.5.2] Exploring activity theory in a design context Figure 3.17. The relationship between humans and objects of environment can be seen as mediated by cultural means, tools and signs. In this view, human action has a tripartite structure (Helsinki, 2008). Chapter Three: Methodology 86 Figure 3.18. This diagram illustrates the relationship between myself as the designer and the patient/user. The objects that would connect us are the worked designed in this thesis (Illustration by Author). Chapter Three: Methodology 87 ? ? ? ? ? [3.5.3] Modifying the activity theory model for design Chapter Three: Methodology 88 Figure 3.19. The structure of a human activity system (Activity Theory Triangle) This model illustrates the elements of activity systems that are used to understand the user. The Subject is the one that commissions or develops the project (such as a designer). The Object is the user (such as a patient). And in order to succeed, rules, community, labour and instruments must be factored in to understand how the user achieves the outcome (University of Helsinki, 2008). Chapter Three: Methodology 89 Figure 3.20. Activity triangle for service design. This model illustrates the different components of an activity that need to be considered to understand the full context of a problem. This example more clearly shows where people are located in the system through visualising people. Illustration by Author based on (University of Helsinki, 2008). Chapter Three: Methodology 90 Chapter Three: Methodology 91 Chapter Three: Methodology 92 Figure 3.21. IDEO's user levels fit the categories of activity theory well, with the addition of a ?political? element in the activity triangle. Left image based on a drawing by Brown (Brown, Innovation through Design Thinking, 2006). [3.5.3.1] Additional modifications to the activity theory model Chapter Three: Methodology 93 Chapter Three: Methodology 94 Figure 3.22. By overlaying the three examples in the previous figure, it becomes apparent which connections have yet to be considered in order to understand the 'entire' problem (Illustration by Author). Chapter Three: Methodology 95 Figure 3.23. New activity theory model focused on constraints, roles and objects as the mediating forces between people (Illustration by Author). Chapter Three: Methodology 96 Figure 3.24. The revised ?activity triangle? for design (Illustration by Author). Chapter Three: Methodology 97 Chapter Three: Methodology 98 4. The User as Patient Chapter Four: The User as Patient 100 [4.1] Empathising with the Patient Experience [4.1.1] The roles of empathy and in-situ experience in design ? ? ? ? ? ? Chapter Four: The User as Patient 101 [4.2] Empirical Primary Research of the Detection and Screening Experience [4.2.1] USA GP Experiences Chapter Four: The User as Patient 102 [4.2.2] UK NHS GP Experiences Chapter Four: The User as Patient 103 [4.2.2.1] Patient experiences at a GP conclusion Chapter Four: The User as Patient 104 [4.2.3] Experiences at an imaging center (breast screening unit) Chapter Four: The User as Patient 105 Chapter Four: The User as Patient 106 [4.2.3.1] Imaging centre conclusion Chapter Four: The User as Patient 107 [4.3] Identifying Patient Needs to Establish Design Recommendations Figure 4.1. Patients were analysed according to three factors: cognitive, emotional and physical. These factors were then used to produce recommendations on how to better communicate visually through designed materials. Illustration by Author. Chapter Four: The User as Patient 108 [4.4] Emotional Patient Needs: Identifying Emotional Barriers to Information [4.4.1] Emotional Needs of Patients: Literature Review Chapter Four: The User as Patient 109 Chapter Four: The User as Patient 110 Figure 4.2. The health belief model as applied to breast cancer detection illustrates the connection between threat and coping information that initiates a protective reaction?based on a chart by Munro et al (Munro, Lewin, Swart, & Volmink, 2007, pp. 6-7). Chapter Four: The User as Patient 111 Figure 4.3. Protection Motivation Theory as applied to breast cancer detection and negative emotions based on a chart by Munro et al (Munro, Lewin, Swart, & Volmink, 2007, pp. 6-7). Chapter Four: The User as Patient 112 ? ? ? ? ? [4.4.1.1] Examples of visual relationships Chapter Four: The User as Patient 113 Figure 4.4. A campaign by The Breast Cancer Fund illustrates a strong threat message that is not coupled with a coping message which can effect a patient's response to breast cancer detection. It also closely links the message of ?sex? with the nude breast next to ?death? with a mastectomy scar. This creates a striking image but does not communicate lifesaving information (Breast Cancer Fund, 2000). Chapter Four: The User as Patient 114 Figure 4.5. This ?Obsessed with Breasts? campaign poster by The Breast Cancer Fund contains multiple threat messages without a coping message (Breast Cancer Fund, 2000). Chapter Four: The User as Patient 115 [4.4.1.2] ?All-or-nothing? emotional reactivity Chapter Four: The User as Patient 116 [4.4.1.3] NBOCC studies on emotional barriers Chapter Four: The User as Patient 117 [4.4.1.4] NBOCC communication solution to these emotional barriers Chapter Four: The User as Patient 118 Figure 4.6. Materials designed to overcome emotional barriers to breast cancer by NBOCC were entirely text-based (NBOCC, 2005). Chapter Four: The User as Patient 119 [4.4.2] Emotional Patient Needs: Design Recommendations & Conclusions Figure 4.7. Emotional issues of women that inhibit information transfer of breast cancer. Illustration by Author. Chapter Four: The User as Patient 120 Chapter Four: The User as Patient 121 [4.5] Cognitive Patient Needs: Identifying Patient Breast Cancer Knowledge [4.5.1] Results of an empirical survey on breast cancer detection issues [4.5.1.1] About the respondents Chapter Four: The User as Patient 122 Figure 4.8. Map of the location of respondents of the breast cancer survey (2007). [4.5.1.2] Patient beliefs on breast cancer success rates [4.5.1.3] Patient beliefs on family history definition and impact on risk Chapter Four: The User as Patient 123 [4.5.1.4] Patient knowledge of breast cancer symptoms Chapter Four: The User as Patient 124 [4.5.1.5] Patient beliefs of screening method importance ?WHAT IS THE BEST WAY TO DETECT BREAST CANCER? 1= NOT USEFUL, 5=MOST USEFUL?: Figure 4.9. When participants were asked to rank the usefulness of breast cancer detection methods, mammography ranked the highest. Chapter Four: The User as Patient 125 [4.5.1.6] Patient beliefs on screening methods [4.5.1.7] Patient beliefs on breast self-exams Chapter Four: The User as Patient 126 [4.5.1.8] Patient beliefs on frequency of clinical breast exams ?HOW FREQUENTLY SHOULD AN AVERAGE WOMAN GET A CLINICAL EXAM IN THE FOLLOWING AGE RANGES??: Figure 4.10. This graph illustrates that most respondents believed that a clinical exam should happen yearly, but decreased with age. The second most popular response was to receive a clinical exam quarterly between the age of 40-69. [4.5.1.9] Patient beliefs on frequency of mammograms ?HOW FREQUENTLY SHOULD AN AVERAGE WOMAN GET A MAMMOGRAM IN THE FOLLOWING AGE RANGES??: Figure 4.11. This graph indicates that respondents felt that mammography should occur every year from ages 40-69. However, screening mammography shouldn't occur prior to age 40, which showed a misconception for the 20-39 age groups that was an overestimation. Chapter Four: The User as Patient 127 [4.5.1.10] Emotional associations with the topic of breast cancer Figure 4.12. When participants were asked to describe their emotional reaction to breast cancer, half of the participants had a negative response, indicating emotional issues were a relevant factor. ? ? ? Chapter Four: The User as Patient 128 ? ? [4.5.2] Cognitive Patient Needs: Design Recommendations & Conclusion Chapter Four: The User as Patient 129 Chapter Four: The User as Patient 130 [4.5.3] Physical Patient Needs: Identifying Physical Categories of Patients [4.5.3.1] Geographic location Chapter Four: The User as Patient 131 [4.5.3.2] Risk factors Figure 4.13. NCI's Breast Cancer Risk Assessment Tool (NCI, 2007). This tool allows individuals and physicians to answer questions about risk factors in order to calculate a patient's risk level. If a patient has a high risk level, then additional screening procedures may be recommended. Chapter Four: The User as Patient 132 ? ? ? ? ? ? ? Chapter Four: The User as Patient 133 [4.5.3.3] Risk statistics according to age Table 4.1. Risk statistics based on the SEER 2003 NCI report find that women above the age of 60 are at the highest risk for breast cancer (NCI, 2006). Figure 4.14. Many breast cancer campaigns depict young women as being the ?poster child? for breast cancer. However, the mean age women diagnosed with breast cancer is 61. This would make the poster on the right more accurate than the original version on the left. Based on the poster by Time for Pink (Time for Pink, 2009). Chapter Four: The User as Patient 134 [4.5.4] Physical Patient Needs: Design Recommendations Chapter Four: The User as Patient 135 [4.6] Patient Needs: Design Guidelines ? ? ? ? ? ? ? Chapter Four: The User as Patient 136 ? ? [4.6.1] Conclusion [4.6.1.1] Patient Personas Chapter Four: The User as Patient 137 Chapter Four: The User as Patient 138 Chapter Four: The User as Patient 139 5. The System of Detection Chapter Five: The System of Detection 141 [5.1] Identifying the Breast Cancer Detection Community [5.1.1] Key Breast Cancer Organisations Chapter Five: The System of Detection 142 Figure 5.1. Additional groups involved in the 'human network' for breast cancer detection. Illustration by Author. Chapter Five: The System of Detection 143 Figure 5.2. Government agencies in the US were a diverse mix of cancer research, military funding, human resource and cancer screening programmes. Illustration by Author. Chapter Five: The System of Detection 144 Figure 5.3. Non-government breast cancer organisations were chosen based on size and influence and an active online educational programme. Professional organisations were included to give context to government recommendations. Revenue figures were gathered from charitynavigator.org. Dr. Susan Love?s Foundation?s revenue was sourced from the Better Business Bureau. Illustration by Author. Chapter Five: The System of Detection 145 Figure 5.4. Organisations in the UK (government and non-government). The UK had a very linear governmental structure. Non-governmental organisations revenue were sourced from the Charity Commission. Organisations were selected based on financial health and mission to provide information on detection in breast cancer. Illustration by Author. Chapter Five: The System of Detection 146 Table 5.1. Table of USA-UK organisation equivalents. While some organisations drew parallels, there was not a similar organisation to the NHS in the US because no government organisation in the US directly controls the health system. Understanding what organisations were similar or dissimilar provided opportunities to compare across health systems. Illustration by Author. Chapter Five: The System of Detection 147 [5.2] Rules of the Breast Cancer Community: Screening Recommendations in the UK and USA [5.2.1] Comparison of recommendations in the UK and USA Chapter Five: The System of Detection 148 Table 5.2. Screening Recommendations of Health Organisations (Komen, 2008). This chart by American breast cancer charity ?Komen for the Cure? outlined the differences in screening recommendations in the USA for women of average risk (UK added for comparison). In the USA, there is no central health authority due to a privatised healthcare system and charities often make their own independent recommendations. In contrast in the UK, the NHS is able to decide screening policies and regulate them accordingly. (1) http://www.cancerscreening.nhs.uk/breastscreen/index.html (2) http://www.cancerscreening.nhs.uk/breastscreen/breastawareness.html Chapter Five: The System of Detection 149 [5.2.2] Changing recommendations [5.2.2.1] ?More is better? argument Chapter Five: The System of Detection 150 [5.2.2.2] Cost benefit argument Chapter Five: The System of Detection 151 Chapter Five: The System of Detection 152 [5.3] Mapping the Diagnostic Patient Journey In Breast Cancer Detection [5.3.1] The patient breast cancer detection journey [5.3.1.1] Diagnostic options for symptomatic patients Chapter Five: The System of Detection 153 Figure 5.5. Flow chart for diagnosing a breast lump in the NHS (Austoker & Mansel, 2003). Chapter Five: The System of Detection 154 Figure 5.6. Recommendations for diagnostic pathways for patients with referred symptoms (Austoker & Mansel, 2003, p. 21). Chapter Five: The System of Detection 155 [5.3.1.2] Diagnostic options for asymptomatic patients Figure 5.7. ?What happens at a breast screening unit?? charts the diagnostic path from screening invitation to treatment using terminology in a physician-centred way, rather than a patient-centred way (NHS, 2007). Chapter Five: The System of Detection 156 Invitation mammogram result abnormal further testing Invitation mammogram result normal no further testing symptom physician mammogram result further testing if needed Chapter Five: The System of Detection 157 Chapter Five: The System of Detection 158 [5.4] Communication connections in breast cancer detection [5.4.1] Mapping the communication connections in the detection process Figure 5.8. Communication map illustrating connections between people involved in breast cancer detection. Illustration by Author. Chapter Five: The System of Detection 159 Chapter Five: The System of Detection 160 Figure 5.9. Suzanne's story highlights the touchpoints between the patient and the health system and where they succeeded and failed. This analysis reveals opportunities for innovation and improvement for other patients. Chapter Five: The System of Detection 161 Health practitioner Communication responsibilities How this is communicated GP Decide if symptom needs further investigation Spoken Talk to patients about breast screening plan Spoken Specialist Communicate with GP and patient about further screening, results and options Letter from NHS, oral communication in person NHS Admin Send invitation to mammography Letter from NHS Nurse Technician Follow correct x-ray procedures Discussion with patient during procedure, Needs to know what procedures to follow based on doctor recommendation Radiologist Read x-rays and inform specialist/GP of result Written object, sometimes discussion with patient if a diagnostic x-ray, but usually not for screening GP Admins Send result of test Written object Spouse, family, friends Console, remind, encourage, suggest or discourage participation in reporting symptoms, attending mammograms, etc. Spoken Designer Organise content into a deliverable output as defined by health educator/manager/practitioner Designed object Table 5.3. By highlighting the communication roles of each of the people involved in the detection process, it revealed areas where communication was not transferred in a tangible way (yellow sections). Chapter Five: The System of Detection 162 Chapter Five: The System of Detection 163 Figure 5.10. Event map for the breast cancer detection process. This map helps to identify communication points along the patient journey, as well as inform the patient of the detection process in a simple visual way. Illustration by Author. Chapter Five: The System of Detection 164 Figure 5.11. The patient journey of breast cancer detection was divided into four events. The first three events of 'find symptom', 'doctor confirms' and 'mammogram' were the focus of this doctoral work. Illustration by Author. 6. Establishing a Visual Strategy for Breast Cancer Detection Chapter Six: Establishing a Visual Strategy 166 [6.1] Developing a Visual Communication Strategy for Breast Cancer Detection [6.1.1] Understanding the current visual language of breast cancer [6.1.1.1] Visualisation of breast cancer symptoms Chapter Six: Establishing a Visual Strategy 167 ? ? ? ? ? ? ? ? ? ? ? WARNING! Explicitly graphic photographs of advanced breast cancer is depicted in the following page. Please do not proceed further if viewing the photographs will cause distress. Facsimile 6.1. Warning labels were sometimes issued to viewers on websites warning them of the graphic nature of the content (Ho, 2003). Chapter Six: Establishing a Visual Strategy 168 Figure 6.1. Photograph of signs of breast cancer that carried a 'graphic content' warning show ?dimpling? on the left and ?indentation? and ?nipple retraction? on the right (Ho, 2003). Chapter Six: Establishing a Visual Strategy 169 Figure 6.2. Images of signs of breast cancer are explicitly graphic and would likely be censored in public. Images compiled from various websites via a Google search (2006). Chapter Six: Establishing a Visual Strategy 170 Figure 6.3. When the breast is coded in line drawings with limited colour, the lack of detail can interfere with the decoding of the image (Scriptography, 1996). Chapter Six: Establishing a Visual Strategy 171 Figure 6.4. This image demonstrates how abstract visuals (Scriptography, 1996) may leave more room for interpretation than is desired or intended. Illustration by Author. Chapter Six: Establishing a Visual Strategy 172 [6.1.2] Literature review of visual theories [6.1.2.1] Visual cognition Chapter Six: Establishing a Visual Strategy 173 [6.1.2.2] Anchoring ideas and metaphors Chapter Six: Establishing a Visual Strategy 174 ? ? ? ? Chapter Six: Establishing a Visual Strategy 175 Figure 6.5. By illustrating the myths of breast cancer, it became a visual study of objects that could metaphorically act as a substitute for a breast. Although a lemon wasn't included in this initial collection of 32 myths, this exploratory process led to finding the lemon metaphor at a later stage. Illustration by Author. Chapter Six: Establishing a Visual Strategy 176 Figure 6.6. Comparison of lemon to breast structure revealed similarities in both appearance and internal composition (Pearson Education, 2009). Chapter Six: Establishing a Visual Strategy 177 Figure 6.7. When it was found that a cancerous lump feels hard and immovable like an almond, it was possible to transfer this information onto the metaphor and use the lemon seed as the analogy for a cancerous lump. Illustration by Author. Chapter Six: Establishing a Visual Strategy 178 Figure 6.8. This visual was designed to illustrate the symptoms of breast cancer by mapping the concept of a breast onto a lemon. This allowed for visual detail to be introduced without becoming grotesque, such as displaying signs of breast cancer without showing breasts (2006). Illustration by Author. [6.1.2.3] Signifier chains Chapter Six: Establishing a Visual Strategy 179 Breast = Sex Cancer = Death Figure 6.9. A campaign by The Breast Cancer Fund illustrates a cognitive shift in associations with breast cancer. For example, the message of ?sex? with the nude breast next to ?death? with a mastectomy scar. This creates a striking image but may not communicate necessary information effectively (Breast Cancer Fund, 2000). Chapter Six: Establishing a Visual Strategy 180 [6.1.2.4] Visual pluralities Figure 6.10. Lemons sitting on a sofa. Illustration by Author. Chapter Six: Establishing a Visual Strategy 181 Figure 6.11. Robert Horn discussed the emergence of a visual language as a new international auxiliary language that tightly integrates words, images and shapes (Horn, 2001, p. 2). Chapter Six: Establishing a Visual Strategy 182 Chapter Six: Establishing a Visual Strategy 183 ? ? ? THE STRUCTURE OF MEANING RELATIONSHIPS Table 6.2. Adapted from ?The Structure of Meaning Relationships? (Moriarty, Visual Semiotics Theory, 2005, p. 237). Chapter Six: Establishing a Visual Strategy 184 [6.1.3] Analysis of the work developed in this thesis Figure 6.12. The construction, rendering and placement of the visual elements, combine to create a symbolic meaning which transform the lemons into breasts. Illustration by Author. Chapter Six: Establishing a Visual Strategy 185 Figure 6.13. When one element is changed, such as the rendering of the colour in the poster, the message changes. In this image, the dark setting and negative images indicate a ghostly appearance. Illustration by Author. [6.1.4] Conclusion Chapter Six: Establishing a Visual Strategy 186 ? ? ? ? Chapter Six: Establishing a Visual Strategy 187 Chapter Six: Establishing a Visual Strategy 188 [6.2] Visually Representing Women [6.2.1] A design review of breast cancer materials [6.2.1.1] The ?several materials for several audiences? approach Chapter Six: Establishing a Visual Strategy 189 ? ? ? Chapter Six: Establishing a Visual Strategy 190 Figure 6.14. Cover of the ?Lesbians and Women who Partner with Women? design recommendation guidelines by Komen (Frame, Lesbians and Women who Partner with Women: Developing Effective Cancer Education Print Materials, 2005). Chapter Six: Establishing a Visual Strategy 191 Figure 6.15. Cover of the Hispanic/Latina design recommendation guidelines (Ramieriz, 2005). Chapter Six: Establishing a Visual Strategy 192 Figure 6.16. Cover of design recommendations for 'Asians and Pacific Islanders' by Komen (Frame & al, Asians and Pacific Islanders: Developing Effective Cancer Education Print Materials, 2005). Chapter Six: Establishing a Visual Strategy 193 Chapter Six: Establishing a Visual Strategy 194 [6.2.1.2] The ?group photo? approach Figure 6.17. This leaflet by the NCI showed a variety of women from different racial backgrounds, as well as ages, to address multiple audiences. It used an illustrative method to represent women (The Facts about Breast Cancer and Mammograms. NCI, 1997). Chapter Six: Establishing a Visual Strategy 195 Figure 6.18. This leaflet by Krames Communications (1994) also represented multiple races in their visuals to increase audience reach, through a detailed drawing. Chapter Six: Establishing a Visual Strategy 196 Figure 6.19. A large variety of women were pictured in the NHS breast screening leaflet for women with learning disabilities (DoH NHS, 2006) . This required a large amount of space however, and resulted in emphasising certain groups over others. For example, the woman with a shaved pink head and piercings is further towards the back than the blonde woman at the front. A woman with a head scarf is very small and at the very back of the crowd as well, which may indicate a lesser importance, which can decrease relevance for those groups, as it may be difficult to pick out their face ?from the crowd? or indicate inequality. Chapter Six: Establishing a Visual Strategy 197 [6.2.1.3] Visualising the mammogram experience Figure 6.20. This NHS leaflet on breast screening uses Caucasian women to illustrate the mammography process, which may not appear relevant to non-Caucasian audiences (NHS, 2006). Chapter Six: Establishing a Visual Strategy 198 Figure 6.21. This photo was used in an US government website to illustrate the mammography experience. However, the visual elements were coded in an out-dated way, by including out- dated hairstyles, accessories (eye glasses) and a contrived posing stance. Visuals that include out-dated appearances may lead the viewer to believe the information surrounding the visual has expired as well and is not relevant to them today (NCI, 2006). Chapter Six: Establishing a Visual Strategy 199 Figure 6.22. This photo shows a woman in a black room, gently holding onto the mammography machine and with a slight smile looking off into the distance while her breast is flattened. The facial expression does not match the experience (source via web search for mammography, http://www.siumed.edu/breastcenter/images/mammogram.jpg). Chapter Six: Establishing a Visual Strategy 200 Figure 6.23. This illustration about mammography shows a patient who is happy having her breast handled by the technician, which is also an unlikely event (American Cancer Society, pre-2006). Chapter Six: Establishing a Visual Strategy 201 Figure 6.24. This image used by the NHS in a breast screening leaflet shows a romanticised view of the mammography experience (through lighting and colour choice), which may lead some viewers to have a romanticised view of the process which may lead to a disappointing experience and a lack of trust in the information source (NHS, 2006). Chapter Six: Establishing a Visual Strategy 202 [6.2.1.4] The ?using symbols? visual approach Figure 6.25. The leaflet on the left was produced and distributed in Wal-Mart in the USA (2005). No images of women were used, instead visuals of flowers were included, avoiding any discrimination, but also making the leaflet less potentially relatable (left). The leaflet on the right by the American Cancer Society (ACS, 2006) used the feminine colour purple and the breast cancer ribbon to visually indicate the topic of breast cancer (right). Chapter Six: Establishing a Visual Strategy 203 [6.2.1.5] ?Racial abstraction? method Figure 6.26. The Illustration used by the American Cancer Society (1991) abstracts the visual of a woman into a line drawing (top) which isn?t racially identifiable. The illustrations used by Channing el Bete company (1996) used an illustration of a woman that was racially ambiguous but included more detail than a line drawing (bottom left). However, some illustrations became comical, which may not have been the intention of the message as is seen in the image bottom right as the technician appears to jokingly grab the patient?s breast, also by Bete (1996). Still circulated in 2006. Chapter Six: Establishing a Visual Strategy 204 [6.2.2] Visual strategy conclusion ? ? ? ? ? ? Chapter Six: Establishing a Visual Strategy 205 [6.3] Visually Representing Women: The Mayor Solution [6.3.1] ?The Mayor? Figure 6.27. Sample of female silhouettes, arranged in order from sexual to asexual in form. Chapter Six: Establishing a Visual Strategy 206 Figure 6.28. Original version of 'The Mayor' breast cancer spokesperson, used to represent women (2006). [6.3.1.1] Improvements to ?The Mayor? Chapter Six: Establishing a Visual Strategy 207 Figure 6.29. Several silhouette shapes were designed to establish a figure that was feminine without being sexually indicative, this included modifying the hair, torso and legs. Figure 6.30. Suzanne was diagnosed with a rare form of breast cancer whilst I was working on my thesis. I spent the afternoon with her and we discussed her wig, this shape later became the inspiration for The Mayor's hairstyle. Chapter Six: Establishing a Visual Strategy 208 Figure 6.31. The author trying on Suzanne's wig in 2007. Chapter Six: Establishing a Visual Strategy 209 Figure 6.32. The Mayor before the redesign and after the redesign, which gave her more personality, style and added symbolism (2007). Chapter Six: Establishing a Visual Strategy 210 Figure 6.33. Analysis of design elements (signifiers) for The Mayor figure. Chapter Six: Establishing a Visual Strategy 211 Figure 6.34. Examples of female and male figures in the Isotype collection, by Gerd Arntz (Vossoughian, 2008). Figure 6.35. Signature of The Mayor was designed as an authoritative mark signifying approval from The Mayor (2008). Chapter Six: Establishing a Visual Strategy 212 Figure 6.36. The Mayor was illustrated in different positions of running, standing and waving. The running figure was included due to the popularity of running events for breast cancer. The standing figure was used to indicate a calm mood, and the waving figure was used for friendly ?introduction? messages (2008). Chapter Six: Establishing a Visual Strategy 213 Figure 6.37. The Mayor figure was also drawn in sitting positions. She is depicted here as taking the place of the lemons on the green sofa. [6.3.2] Testing The Mayor with multiple audiences [6.3.2.1] Non-Western audience: Qatar Chapter Six: Establishing a Visual Strategy 214 Figure 6.38. In 2008, these photos were taken of college students in Qatar looking at the breast cancer materials I designed. Notice how they are similarly dressed to The Mayor with the black dress and sleeves. Courtesy of Cadena-Malek, 2008. [6.3.2.2] Global audiences: Online Survey Chapter Six: Establishing a Visual Strategy 215 Chapter Six: Establishing a Visual Strategy 216 Figure 6.39. Women in the survey were asked which leaflet they would prefer to read. 34 out of 40 participants selected The Mayor leaflet A. Chapter Six: Establishing a Visual Strategy 217 Figure 6.40. Gray highlights were added to The Mayor's hair to increase her age (2010). Chapter Six: Establishing a Visual Strategy 218 Chapter Six: Establishing a Visual Strategy 219 [6.4] Developing a Brand for the Breast Cancer Materials [6.4.1] Storytelling devices Chapter Six: Establishing a Visual Strategy 220 Figure 6.41. This is an illustration used on one of the original websites encouraging women to ?Visit Lemonland Once a Month?. This was designed in 2006 when breast self-exam recommendations were more formal and accepted than today in 2010. Chapter Six: Establishing a Visual Strategy 221 Figure 6.42. Originally, the ?plus symbol? at the end of the wordmark was to be used as a replacement of the ?Lemonland? wordmark in the case of limited space. However, in order to develop recognition for an abstract mark such as this, a great deal of repetition and money needed to be spent before the public would connect the mark to breast cancer. This seemed unnecessary when a mark already existed for the disease?the pink ribbon. So the mark was abandoned and the pink ribbon symbol was embedded into the wordmark (2006). Figure 6.43. For the typeface, sharp forms were avoided and a typeface with rounded edges was used, representative of a woman?s curves but more friendly than feminine. Additionally, thin character style was avoided so that the wordmark wouldn?t be a signifier of dainty or weak, but solid and stable. The website address as part of the mark was also incorporated, which lacked a visual flow as seen here (2007). Chapter Six: Establishing a Visual Strategy 222 ? ? ? Figure 6.44. The first 'Worldwide Breast Cancer' logo was right justified with a more frilly subtitle script, which became illegible at small sizes (2008). Figure 6.45. The final Worldwide Breast Cancer logo was designed with a stronger, more saturated pink colour, and a refined script typeface that was more legible than the original script typeface at smaller sizes and matched the uniformity of the Frankfurter font (2009). Chapter Six: Establishing a Visual Strategy 223 [6.4.2] Worldwide Breast Cancer branding guidelines Chapter Six: Establishing a Visual Strategy 224 Figure 6.46. The branding guide gave examples of how the wordmark should not be used. Chapter Six: Establishing a Visual Strategy 225 Figure 6.47. The branding guide included examples of how the logo would work with various background colours. Chapter Six: Establishing a Visual Strategy 226 [6.4.2.1] Colour scheme Figure 6.48. Colour scheme guidelines for breast cancer materials were finalised toward the end of the work (2009). Chapter Six: Establishing a Visual Strategy 227 [6.5] Chapter Conclusion 7. Realising Print Materials Chapter Seven: Realising Print Materials 229 [7.1] Designing Materials for Patient Events Figure 7.1. The patient journey of breast cancer detection was divided into four events. The first three events: 'find symptom', 'doctor confirms' and 'mammogram' were the primary focus of this doctoral work. Chapter Seven: Realising Print Materials 230 [7.2] Patient Event 1: Finding the Symptom [7.2.1] Literature review of symptoms [7.2.1.1] Finding the symptom?through ?breast self-exam? or ?breast awareness?? Chapter Seven: Realising Print Materials 231 Chapter Seven: Realising Print Materials 232 [7.2.1.2] Reporting symptoms of breast cancer Chapter Seven: Realising Print Materials 233 [7.2.2] Communicating visible symptoms of breast cancer Chapter Seven: Realising Print Materials 234 Figure 7.2. Illustration of signs of breast cancer that was shown to a leading breast cancer oncologist and was verified to be accurate. Illustration by Author (2003). Chapter Seven: Realising Print Materials 235 [7.2.3] User testing with the symptoms image [7.2.3.1] First survey testing the symptoms visual Figure 7.3. Study #1: Participants were shown the new image at full-screen size and asked to label each sign lettered A-L. This is the image survey participants viewed in order to suggest their own labels for each sign of breast cancer. Illustration by Author (2008). Chapter Seven: Realising Print Materials 236 Figure 7.4. Rate of accurate interpretation per symptom found that most interpretations were accurate but some symptoms needed adjustment and were more dependent on a text description than others. (ibid) Chapter Seven: Realising Print Materials 237 Figure 7.5. Final refined signs image based on feedback from public survey (2010). [7.2.3.2] Survey conclusion and results Chapter Seven: Realising Print Materials 238 [7.2.3.3] Adding text labels Figure 7.6. Early version of ?signs of breast cancer? image. Originally, the labels were 'stamped' onto each lemon in a rasterized format. However, when future translations would be needed the image, this labelling system would be difficult because it would require the text to be adjusted manually to fit the contour of each lemon for each language, rather than just changing the text in a vector format, which is more editable than a raster format. Chapter Seven: Realising Print Materials 239 Figure 7.7. Grey's Book of Anatomy diagram of bone marrow cells used an italic text for labelling. This is one typographical signifier of a medical illustration (Serc Media, 2006). Figure 7.8. Text labels were changed to overlay on top of the image, in a typeface that was similar to professional medical anatomy illustrations to appear more medically authoritative (2009). Chapter Seven: Realising Print Materials 240 [7.2.4] Second survey testing symptoms visual (and text) results Chapter Seven: Realising Print Materials 241 Figure 7.9. Most people surveyed had a positive educational experience with the signs image. Figure 7.10. The final image of the signs of breast cancer incorporated user feedback on both the text and visual elements (2010). 8. Would you be able to recognise these signs on yourself better now that you've seen the image? Tick all that apply. Item Count Percent % The image has helped me understand signs of breast cancer, better than the text alone. 32 88.89% The image makes me feel more confident in my ability to recognise breast cancer. 23 63.89% The image makes me nervous about breast cancer, more than the text description. 8 22.22% I would recognise these signs without having seen the image or the text description. 2 5.56% Great visual metaphor! 1 2.78% I am still unsure what is meant by "invisible lump" and "nipple retraction", even with the image 1 2.78% I find it a bit strange that lemons are used! But I suppose you are not allowed to show breasts in any kinds of advertising, even if it could help prevent cancer which seems sad to me. 1 2.78% I think it is a wonderful image for use in teaching about breast cancer! 1 2.78% really good new way to illustrate this 1 2.78% Really useful! 1 2.78% seeing is more conclusive 1 2.78% The image was extremly helpful 1 2.78% the picture is an awesome graphic! 1 2.78% The visual example of how symptoms might appear is very helpful. Would help people who have problems understanding written information. 1 2.78% very good to have the image as well as the description 1 2.78% what a great graphic tool for explaining the signs 1 2.78% Page 8 of 10 Response Summary Report Chapter Seven: Realising Print Materials 242 [7.2.5] Evolution of the symptoms poster Figure 7.11. The original background of the symptoms poster was white, with a simple line of text to identify the source. The white made the image very clear, but seemed too stark for a friendly message. Also note the amount of space the carton lid used in the image (2003). Chapter Seven: Realising Print Materials 243 Figure 7.12. The next poster included a yellow band along the bottom to act as a space for identifying the brand in the full series of posters and including a signature of ?The Mayor? of Lemonland as an endorsement. Corners were rounded to reflect the round shape of the breast and the rounded corners on the website (2005). Figure 7.13. After The Mayor was redesigned with her signature on her skirt, she was added to the bottom corner of each poster in the series, with Creative Commons licensing information and the new Worldwide Breast Cancer.com address and wordmark added (2007). Chapter Seven: Realising Print Materials 244 Figure 7.14. Final poster of the signs of breast cancer had a muted branding allowing the image to take precedence, with the symptoms being shown at a larger size after the carton lid was reduced (2010). Chapter Seven: Realising Print Materials 245 [7.2.6] Communicating tactile symptoms of breast cancer Figure 7.15. This image was shown to patients to test memory recall between a traditional line drawing versus the visual metaphor (lemon). Image by (Patient.co.uk, 2009). Chapter Seven: Realising Print Materials 246 Figure 7.16. This early version of an illustration of breast anatomy used familiar foods to communicate tactile information (pre-2006). Chapter Seven: Realising Print Materials 247 [7.2.7] Testing the anatomy visual and poster designs Figure 7.17. This updated poster was shown to cancer experts to determine if the anatomy of the breast had an accurate message (2007). Chapter Seven: Realising Print Materials 248 [7.2.7.1] Changes to the anatomy poster Figure 7.18. Refined poster illustrating breast anatomy (2010). [7.2.7.2] Survey to test the anatomy visual, summary and results Chapter Seven: Realising Print Materials 249 Chapter Seven: Realising Print Materials 250 [7.2.8] Visualising the concept of a self-exam Figure 7.19. Lemons were put in several positions to illustrate the methods for breast self- exam. This image was included in the first version of the website in 2006. Chapter Seven: Realising Print Materials 251 [7.2.8.1] Testing the self-exam visual Figure 7.20. This image was shown to children to ask whether they saw a pair of breasts, to assess censorship potential (2010). ? ? ? ? ? ? ? Chapter Seven: Realising Print Materials 252 ? ? ? ? ? ? ? ? Chapter Seven: Realising Print Materials 253 [7.2.9] Breast self-exam poster designs Figure 7.21. First phase version of the BSE sofa poster minimised the text in order to follow the curves of the sofa. This was a type solution that sacrificed function for form with a very aesthetic view of design, as the type was difficult for viewers to read (2003). Chapter Seven: Realising Print Materials 254 Figure 7.22. The second version of the BSE Sitting poster removed the pink rug, enlarged the lemons on the sofa and introduced The Mayor figure. However, the balance between text and image seemed to compete with each other (2007). Figure 7.23. Third phase of the BSE Sitting poster, uses a more saturated colour palette with an arched headline over the sofa, incorporating a script font that resembles the logo wordmark (2010). Chapter Seven: Realising Print Materials 255 [7.2.10] Abandoned posters Figure 7.24. The bed poster was not taken past the first phase of design as it closely resembled the sofa poster message and was found to be redundant (2003). Chapter Seven: Realising Print Materials 256 Figure 7.25. This second phase poster illustrated the ?shower BSE? concept, but was not part of the final phase three round of posters as the message of a ?shower? BSE was secondary to the BSE concept in general, which was illustrated by the sofa poster (2007). Chapter Seven: Realising Print Materials 257 Figure 7.26. 'Breast cancer dance poster' was created in phase two, but was later abandoned in favour of a leaflet that was designed as part of this doctoral work that combined the signs of breast cancer and anatomy images more effectively (2008). Chapter Seven: Realising Print Materials 258 [7.2.11] Summary ? ? ? Chapter Seven: Realising Print Materials 259 [7.3] Patient Event 2: Doctor Confirms [7.3.1] Clinical breast exam Chapter Seven: Realising Print Materials 260 Figure 7.27. This poster was designed to illustrate the patient event of a clinical breast exam (2006). Chapter Seven: Realising Print Materials 261 [7.3.2] Self-reporting symptoms Register waiting room exam room doctor arrives Register waiting room exam room where doctor is present Chapter Seven: Realising Print Materials 262 Figure 7.28. A poster on the wall could guide the patient discussion by presenting topics for the patient to choose, or provide a pretext to the discussion for the patient while waiting for the doctor to arrive in the exam room. Illustration by Author, (2010). Figure 7.29. This poster describes the steps of screening as a way to stimulate conversation about a screening plan between doctor and patient (2010). Chapter Seven: Realising Print Materials 263 Figure 7.30. This poster illustrates rates of breast cancer worldwide and could be displayed in a women's clinic as part of breast cancer education (2010). [7.3.3] Developing a communication aid for discussing a patient?s risk Chapter Seven: Realising Print Materials 264 Figure 7.31. This form was designed to be used during a doctor's visit to discuss risk factors for breast cancer with the patient. The results from this discussion would then lead into creating a screening plan for the individual patient (2010). Chapter Seven: Realising Print Materials 265 Figure 7.32. Illustration of the form being filled-in by a physician during a patient discussion. Chapter Seven: Realising Print Materials 266 [7.3.3.1] Testing the risk assessment form Chapter Seven: Realising Print Materials 267 Figure 7.33. This updated form was redesigned to make the purpose of the form more pronounced by using a black background. If the white boxes at the bottom were not filled in, it would be clear that the form had not been completed, compared to the other form, which didn?t intuitively suggest that a recommendation should be written on the form. Additional questions about lifestyle and HRT were also included based feedback from the oncologist. Illustration by Author (2010). Chapter Seven: Realising Print Materials 268 [7.3.4] Possible ways to integrate the communication aids into the clinical exam experience Chapter Seven: Realising Print Materials 269 Figure 7.34. Diagram of how the communication aids could be used during a clinical exam. Illustration by Author (2010). Chapter Seven: Realising Print Materials 270 [7.3.5] Summary Chapter Seven: Realising Print Materials 271 [7.4] Patient Event 3: Mammogram Figure 7.35. The third patient event in the breast cancer detection process is mammography. [7.4.1] Literature review of mammography Chapter Seven: Realising Print Materials 272 DIFFERENCES IN RECOMMENDATIONS FOR SCREENING MAMMOGRAPHY IN USA AND UK Table 7.1. Screening mammograms are more frequent in the US than the UK, which also lead to increased false-positive and positive results. [7.4.1.1] Benefits and risks of screening Chapter Seven: Realising Print Materials 273 [7.4.1.2] False-positive results CUMULATIVE PROBABILITY OF A FALSE-POSITIVE RESULT FOR A MULTIMODAL CANCER SCREENING REGIMEN Table 7.2. ?Cumulative probability of a false-positive result for a multimodal cancer screening regimen?. Women are shown in light gray (Croswell et al, 2009). Chapter Seven: Realising Print Materials 274 [7.4.1.3] False-negative results [7.4.1.4] High risk patient pathway Chapter Seven: Realising Print Materials 275 Chapter Seven: Realising Print Materials 276 [7.4.2] Interviews with mammography technicians Chapter Seven: Realising Print Materials 277 Tech x-rays patient gives x-ray to radiologist radiologist may ask for more x-rays radiologist gives diagnostic opinion to technician mammography technician relays x-ray outcome to patient verbally ? ? ? ? Chapter Seven: Realising Print Materials 278 Figure 7.36. Communication pathway for a diagnostic mammogram in private healthcare. The objects in blue are communication tools that could be used in each point in the pathway. Illustration by Author (2010). Figure 7.37. Communication pathway for a screening mammogram in the NHS. Illustration by Author (2010). Chapter Seven: Realising Print Materials 279 [7.4.3] Testing communication aids in a mammography centre ? ? ? ? Figure 7.38. This poster illustrated mammography as a way to create a visual history of changes of the breast. Illustration by Author (2007). Chapter Seven: Realising Print Materials 280 Figure 7.39. Mary Jo Strack, lead mammographer in the screening centre in Oklahoma used the materials to educate patients in the centre. This photo shows Mary Jo with the anatomy poster, Mayor clock and calendar in the screening office. Photo courtesy MJ Strack (2008). [7.4.4] Posters in an imaging clinic waiting room Chapter Seven: Realising Print Materials 281 Figure 7.40. These photographs show how the posters were incorporated into the waiting room environment in the screening centre in Oklahoma. Patients were also offered a take-home leaflet, which was a request suggested by the patients after seeing the posters. Photos courtesy MJ Strack (2008). Chapter Seven: Realising Print Materials 282 [7.4.4.1] Signs of breast cancer poster in a changing/mammography room Chapter Seven: Realising Print Materials 283 Figure 7.41. The ?signs of breast cancer? poster was displayed in the mammography room in the Oklahoma centre, which was also the room women used for changing into a gown prior to the procedure. The poster was found to stimulate conversation about the signs of breast cancer between the patient and the mammographer. Photo courtesy MJ Strack (2008). Chapter Seven: Realising Print Materials 284 [7.5] All Patient Events: Breast Screening Leaflet [7.5.1] Breast screening leaflet [7.5.1.1] Oklahoma leaflet trial Chapter Seven: Realising Print Materials 285 Figure 7.42. This leaflet was given to patients at the Oklahoma screening centre, and was printed locally with name and logo customised on the cover for the organisation. Photo courtesy MJ Strack (2008). Chapter Seven: Realising Print Materials 286 Figure 7.43. Screening leaflet side A. Illustration by Author (June 2008). Figure 7.44. Latest version of the screening leaflet side A. This included an older Mayor and information that could be used in the USA and UK. The lemon seed was also emphasised in the anatomy section, eliminating the lateral cross-section. (2010) Chapter Seven: Realising Print Materials 287 Figure 7.45. Screening leaflet side B. Illustration by Author (June 2008). Figure 7.46. Screening leaflet side B. The ?dozen signs? image and labels were updated based on patient and clinician feedback. The frequency of mammograms were adjusted to reflect varied recommendations in the USA and UK. Information also included statistics on the effectiveness of self-exam and mammography. (2010) Chapter Seven: Realising Print Materials 288 [7.5.1.2] Oncologist feedback on the leaflet Chapter Seven: Realising Print Materials 289 Figure 7.47. Final version of the breast screening leaflet (2011). Chapter Seven: Realising Print Materials 290 [7.6] Chapter Summary and Conclusion Chapter Seven: Realising Print Materials 291 ? ? ? ? ? Chapter Seven: Realising Print Materials 292 ? ? ? ? ? 8. Realising the Website Chapter Eight: Realising the Website 294 [8.1] The Internet and Breast Cancer Detection [8.1.1] Internet use in health information Figure 8.1. According to the 2007 HINTS survey, patients are twice as likely to go initially to the internet for cancer information, rather than speaking with a health care provider first (HINTS, 2009). Chapter Eight: Realising the Website 295 Chapter Eight: Realising the Website 296 Chapter Eight: Realising the Website 297 Figure 8.2. This data finds that younger audiences are more likely to engage online. This data may have changed since the growth of social networking sites such as Facebook, but reflects the roles internet users can participate in that can lead to engagement with breast cancer detection and screening (Hempel, 2007). Chapter Eight: Realising the Website 298 [8.1.2] Design review of websites ? ? Chapter Eight: Realising the Website 299 Figure 8.3. An overview of breast cancer websites collected in 2006 illustrated the reliance on text to communicate to audiences. Chapter Eight: Realising the Website 300 Figure 8.4. CRUK website (2006). The CRUK website included a list of questions for patients to click on to discover more information. An image was included on the mammography page, which depicted a woman with a compressed breast. Finding the breast cancer section in the CRUK website was difficult and took three clicks and a few minutes to navigate to. Other types of cancer having to be covered on the website, as well as organisation and fundraising information announcements tended to clutter the presentation of the specific disease. Chapter Eight: Realising the Website 301 Figure 8.5. NHSBSP website (2006). The NHSBSP website has also changed very little since 2006 and was similar to CRUK's website which listed questions about the programme as a navigation tool. Text was used in abundance. Finding this website was difficult to do via the main NHS website. Instead, this website was found through a Google web search asking for this particular department, which was not very patient accessible. However, it did contain several key sources of information useful to this thesis, such as patient pathway protocols and links to reports and statistics?ideal for a research audience. Chapter Eight: Realising the Website 302 Figure 8.6. NCI website on breast cancer (2006). The design and structure of the NCI website uses a large amount of text and links to present breast cancer information. The only images included on the site are those of smiling faces. This large amount of text may be too burdensome for some viewers to navigate. However, finding the breast cancer section on the NCI website was easy to find. The audience was for patients and physicians, as it had separate entry points for both. Chapter Eight: Realising the Website 303 Figure 8.7. Breakthrough Breast Cancer (2006). Breakthrough Breast Cancer used images to illustrate each topic of their breast cancer information section. However, when describing what to look for while being ?breast aware?, no visuals were used. The website was very easy to navigate, aimed at patients and design and it appeared as an integrated communication strategy, rather than an add-on. Chapter Eight: Realising the Website 304 Figure 8.8. Komen for the Cure website (2006). While the Komen website has undergone considerable changes since 2006, the first version was text heavy and placed images below descriptions. The image was of a topless woman looking away and included very feminine and soft colours. Navigation was easy to use, and it was clear that the presentation had patients in mind in the making of the website. detection Chapter Eight: Realising the Website 305 [8.2] Website Version One: Lemonland.org [8.2.1] Version 1 (January 2006-October 2007, 21 Months) Figure 8.9. Home page of Version 1 of the Lemonland.org website (2006). Chapter Eight: Realising the Website 306 Figure 8.10. Labelling structure of the Version 1 website (2006). Chapter Eight: Realising the Website 307 Figure 8.11. If more words were needed in the right side column, it would create a gap below the image, pushing the rest of the page down and breaking the layout. Chapter Eight: Realising the Website 308 Figure 8.12. This screenshot of the Lemonland Version 1 ?Investigation? category has a sub- navigation menu which also had a fixed width limiting the amount of secondary links for each category (2006). Chapter Eight: Realising the Website 309 Figure 8.13. Lemonland Version 1 ?Department of Defense? category page demonstrates how each category had a different visual to illustrate a new section (2006). Chapter Eight: Realising the Website 310 Figure 8.14. Lemonland Version 1 ?Office of Citizenship? homepage (2006). Chapter Eight: Realising the Website 311 Figure 8.15. ?The Mayor of Lemonland's Office?. Lemonland.org. Version 1 contained a disclaimer about the content (2006). Chapter Eight: Realising the Website 312 Figure 8.16. ?Myths? page in Lemonland Version 1 (2006). Chapter Eight: Realising the Website 313 [8.2.2] Website feedback from a cancer radiologist Chapter Eight: Realising the Website 314 [8.2.3] Conclusion for improvements based on website version 1 Chapter Eight: Realising the Website 315 [8.3] Website Version Two: Worldwidebreastcancer.com [8.3.1] Version 2 (October 2007-February 2009, 16 Months) ? ? ? ? ? ? ? Chapter Eight: Realising the Website 316 [8.3.2] Description of redesign Figure 8.17. Homepage of website, Version 2 included buttons for each category with its own colour and icon, 2007. [8.3.2.1] Navigation Chapter Eight: Realising the Website 317 Figure 8.18. Each category had its own colour, which changed according to the top navigation selection. The top navigation remained in a left-to-right alignment with the secondary navigation a top-to-bottom one. Chapter Eight: Realising the Website 318 [8.3.2.2] Secondary pages Figure 8.19. Thumbnails were used in Version 2 of the website to compensate for screen size, allowing users to click on the thumbnail to view the posters at full size. Chapter Eight: Realising the Website 319 Figure 8.20. Example of the enlarged poster image in Version 2. Chapter Eight: Realising the Website 320 [8.3.2.3] Typography Figure 8.21. Headlines on the website were rendered in the font Frankfurter using sIFR, which allowed the text to be selected and read by search engines. [8.3.3] User behaviour analysis [8.3.3.1] Navigation and user entry Chapter Eight: Realising the Website 321 Chapter Eight: Realising the Website 322 Figure 8.22. Before 25 July 2008: ?How breast cancer looks? page with text inline encouraging users to expand the thumbnail images. Click rate on the image was 28% on the busiest day of traffic (Pageviews: 1,553). Chapter Eight: Realising the Website 323 Figure 8.23. After 25 July 2008: Introduction page to 'signs of breast cancer' with added introduction to three key pages. This increased viewing other pages dramatically. Chapter Eight: Realising the Website 324 Figure 8.24. View of ?How breast cancer looks? page with added red text at the top to encourage users to click on thumbnail image. Click rate on the thumbnail image was 60% on the four busiest days, cumulatively. (Pageviews: 420). Chapter Eight: Realising the Website 325 [8.3.3.2] Screen size Chapter Eight: Realising the Website 326 Figure 8.25. Google Analytics statistics showed that visitors had larger screens than the year before, indicating there was now more room to design the website. Chapter Eight: Realising the Website 327 [8.3.4] Conclusion for improvements based on the second version of the website Chapter Eight: Realising the Website 328 [8.4] Website Version Three: Worldwidebreastcancer.com [8.4.1] Version 3 (February 2009 ? March 2010, 13 Months)5 [8.4.2] Changes implemented in third version ? ? ? ? ? ? Chapter Eight: Realising the Website 329 Figure 8.26. Homepage of Version 3 of the worldwide breast cancer site had a simplified top navigation to de-clutter the page, putting emphasis on the content. The top image rotated to highlight different topics found on the website. Post July, 2009. Chapter Eight: Realising the Website 330 Figure 8.27. Screen shot of the breast cancer map that was developed with CartoSoft as part of this doctoral project. This map allowed patients to type in their postcode in the US or England to find their nearest breast screening unit (2008). Found at http://www.cartosoft.com/lab/worldwidebreastcancer/ Figure 8.28 Chapter Eight: Realising the Website 331 Figure 8.28. Version 3 of the website displayed posters at a larger size to increase viewing. Each section had its own colour scheme and a large footer to encourage exploration. Chapter Eight: Realising the Website 332 Figure 8.29. Information about types of breast cancer and treatment was included in Version 3 of the website. It was later eliminated due to the focus of the website being adjusted to screening and detection specific. Chapter Eight: Realising the Website 333 Figure 8.30. A breast cancer screening pamphlet was added to the 'Goodies' section of the site, post July 2008. Chapter Eight: Realising the Website 334 Figure 8.31. The homepage was later simplified to help reduce loading times, and a link to print materials included on the footer, post July 2008. ? ? ? ? ? ? Chapter Eight: Realising the Website 335 Figure 8.32. A rotating image was included on the homepage, covering topics such as risk, screening, signs, The Mayor and educational materials, post July 2008. Chapter Eight: Realising the Website 336 [8.5] Comparative statistical analysis of the website [8.5.1] Visitor statistics in three website versions ? ? ? ? ? ? [8.5.1.1] Traffic analysis Chapter Eight: Realising the Website 337 Traffic statistics for the three website versions: Website Version Unique visitors Number of visits Pages Viewed Version 1 Mar 06 ? Sept 07 6397 8913 34887 Version 2: Oct 07 ? Feb 09 16138 23583 125964 Version 3: March 09 ? April 2010 19951 40116 126935 Averages per month: v1 (19 mo) 334 469 1836 v2 (17 mo) 949 1387 7410 v3 (13 mo) 1534 3085 9764 Table 8.1. Visitor statistics for each website version were collected from the webhost using Awstats, and was the most reliable data source compared to Google Analytics that didn't collect data until October 2007. ? ? ? ? Chapter Eight: Realising the Website 338 Figure 8.33. This graph compares Version 3 (blue) with Version 2 (green). Version 2 of the website had a higher number of page views and a lower 'bounce rate'. However Version 3 of the website increased visitors by 28%. Chapter Eight: Realising the Website 339 Figure 8.34. Traffic peaked in October on the website every year (2006-2009). [8.5.1.2] Geographic location lemonland.org Screen Resolutions Aug 18, 2008 - Apr 6, 2010Comparing to: Site 0 100 200 0 100 200 Aug 18 Oct 11 Dec 4 Jan 27 Mar 22 May 15 Jul 8 Aug 31 Oct 24 Dec 17 Feb 9 Apr 4 Visits 19,468 visits used 197 screen resolutions Site Usage Visits 19,468 % of Site Total: 100.00% Pages/Visit 3.61 Site Avg: 3.61 (0.00%) Avg. Time on Site 00:02:11 Site Avg: 00:02:11 (0.00%) % New Visits 89.19% Site Avg: 89.07% (0.13%) Bounce Rate 43.58% Site Avg: 43.58% (0.00%) Screen Resolution Visits Visits 1024x768 5,922 30.42% 1280x800 4,507 23.15% 1280x1024 2,308 11.86% 1440x900 1,596 8.20% 1680x1050 1,121 5.76% 800x600 616 3.16% 1366x768 473 2.43% 1920x1200 459 2.36% 1152x864 443 2.28% 1280x768 331 1.70% 320x396 188 0.97% 1280x960 161 0.83% 1024x600 151 0.78% 1280x720 133 0.68% 1400x1050 118 0.61% 1920x1080 84 0.43% 1600x900 78 0.40% 1024x640 68 0.35% 1600x1200 66 0.34% 1152x720 54 0.28% 1360x768 45 0.23% 1024x819 30 0.15% Visits 30.42% 23.15% 11.86% 8.20% 5.76% 8.69% 1 Google Analytics Chapter Eight: Realising the Website 340 Figure 8.35. List of the top 16 most popular countries that visited the breast cancer website from October 2007 ? April 2010. Chapter Eight: Realising the Website 341 Table 8.2. Incidence and mortality rates of breast cancer per country (CRUK, 2009). Chapter Eight: Realising the Website 342 [8.5.1.3] How visitors found the website Figure 8.36. User data showed the sources of visitor traffic, which indicated the route of entry. The top ten ?referrers? are shown here, with 55% of visitors locating the website through a search engine. Note: Todderplanet was a breast cancer patient who blogged about breast cancer. lemonland.org All Traffic Sources Oct 18, 2007 - Apr 6, 2010Comparing to: Site 0 400 800 0 400 800 Oct 22 Jan 12 Apr 3 Jun 24 Sep 14 Dec 5 Feb 25 May 18 Aug 8 Oct 29 Jan 19 Visits All traffic sources sent 25,485 visits via 448 sources and mediums Site Usage Visits 25,485 % of Site Total: 100.00% Pages/Visit 3.79 Site Avg: 3.79 (0.00%) Avg. Time on Site 00:02:09 Site Avg: 00:02:09 (0.00%) % New Visits 89.35% Site Avg: 89.24% (0.13%) Bounce Rate 40.46% Site Avg: 40.46% (0.00%) Source/Medium Visits Visits google / organic 10,115 39.69% (direct) / (none) 3,274 12.85% toddlerplanet.wordpress.com / referral 1,352 5.31% bing / organic 1,290 5.06% yahoo / organic 1,032 4.05% msn / organic 1,009 3.96% lemonland.org / referral 653 2.56% images.google.com / referral 650 2.55% live / organic 517 2.03% stumbleupon.com / referral 509 2.00% Visits 39.69% 12.85% 5.31% 5.06% 19.95% 1 - 10 of 448 1 Google Analytics Chapter Eight: Realising the Website 343 [8.5.1.4] Keywords used by visitors Figure 8.37. This chart reports the most used phrases typed into search engines in order to find the website, from October 2007 ? April 2010. lemonland.org Keywords Oct 18, 2007 - Apr 6, 2010Comparing to: Site 0 35 70 0 35 70 Oct 22 Jan 12 Apr 3 Jun 24 Sep 14 Dec 5 Feb 25 May 18 Aug 8 Oct 29 Jan 19 Visits Search sent 14,402 total visits via 4,471 keywords Site Usage Visits 14,402 % of Site Total: 56.51% Pages/Visit 3.19 Site Avg: 3.79 (-15.77%) Avg. Time on Site 00:01:56 Site Avg: 00:02:09 (-9.89%) % New Visits 91.55% Site Avg: 89.24% (2.59%) Bounce Rate 46.11% Site Avg: 40.46% (13.97%) Keyword Visits Pages/Visit Avg. Time on Site % New Visits Bounce Rate what does breast cancer feel like 825 2.88 00:01:48 91.39% 51.88% what does breast cancer look like 771 2.61 00:01:07 96.50% 55.51% breast cancer statistics worldwide 615 2.33 00:02:39 87.97% 50.57% signs of breast cancer 313 4.53 00:02:30 96.17% 20.45% breast cancer world statistics 303 2.34 00:02:24 89.77% 46.20% breast cancer worldwide 277 3.26 00:02:29 85.92% 46.21% world breast cancer statistics 227 2.57 00:02:03 85.02% 52.42% breast cancer pamphlets 215 3.98 00:02:41 92.09% 36.74% worldwide breast cancer 192 8.22 00:04:19 61.98% 30.73% breast cancer risk calculator 174 2.06 00:00:31 90.80% 57.47% 1 - 10 of 4,471 1 Google Analytics Chapter Eight: Realising the Website 344 [8.5.1.5] Screen size Figure 8.38. This is a comparison of user screen sizes, with the screens on top being the most prevalent size. Chapter Eight: Realising the Website 345 [8.5.2] Conclusion of requirements for a future website version based on user behaviour of all three versions ? ? ? ? ? ? ? ? ? ? ? Chapter Eight: Realising the Website 346 [8.6] Prototyping the Future Website [8.6.1] Paper prototyping Chapter Eight: Realising the Website 347 Figure 8.39. This is the paper prototype used to assess how people would use the website prior to programming a working site (2010). Chapter Eight: Realising the Website 348 Figure 8.40. Users would point at parts of the image and state what they thought that action would provide. In this second interface, users often said that clicking on the lemons would bring up specific information about that symptom, which was not an originally anticipated feature of the website. Chapter Eight: Realising the Website 349 Figure 8.41. The first interface prototype was annotated immediately after the user feedback was given. Chapter Eight: Realising the Website 350 Figure 8.42. Post-it notes reflected user feedback that the lemons should be 'clickable' to reveal more information. [8.6.2] Refined design after paper prototyping Chapter Eight: Realising the Website 351 Figure 8.43. Refined interface design for a future version of the website (2010). Chapter Eight: Realising the Website 352 Figure 8.44. Annotated interface outlined technical and visual features for the future website (2010). Chapter Eight: Realising the Website 353 [8.6.3] Mobile version for smartphones Figure 8.45. Screenshot of the mobile prototype of the Worldwidebreastcancer.com website. The first screen would offer the viewer a list of categories to browse, with options for participating in the website remaining at the bottom of the screen (2010). Chapter Eight: Realising the Website 354 Figure 8.46. This screenshot illustrates what a viewer would see after selecting the 'symptoms' category, revealing a list of questions on the subject to expand. Figure 8.47. This screenshot illustrates what the viewer would see when the first 'symptoms' question is expanded for further view. The expanded page is identical to the website page seen in Figure 8.43, with the exception of navigation. Chapter Eight: Realising the Website 355 Figure 8.48. To allow users to browse in other categories, 'more' is placed next to the current category. This follows the navigation of other Google mobile web versions, such as Google Reader, which provides a pop-up list of other categories to browse without having to return to the home menu. Figure 8.49. This screenshot illustrates how viewers would be able to view a slideshow of the posters on the website for a more visually based browsing experience. The images would be able to be enlarged through the iPhone magnification gesture and explored in further detail. Chapter Eight: Realising the Website 356 [8.6.4] Summary and conclusion for website version four Chapter Eight: Realising the Website 357 9. Conclusion & Reflection Chapter Nine: Conclusion & Reflection 359 [9.1] Original Contributions [9.1.1] Cognitive discoveries [9.1.2] Emotional discoveries Chapter Nine: Conclusion & Reflection 360 [9.1.3] Physical discoveries [9.2] Original Contributions to the Field of Visual Design ? ? ? Chapter Nine: Conclusion & Reflection 361 ? ? ? ? ? ? Chapter Nine: Conclusion & Reflection 362 ? [9.3] Key Aims and Reflections [9.3.1] Save lives Chapter Nine: Conclusion & Reflection 363 [9.3.2] Demonstrate necessity and value of design in patient interactions Chapter Nine: Conclusion & Reflection 364 [9.3.3] Create patient-centred materials that overcome barriers [9.4] Generalisability and Future Recommendations Chapter Nine: Conclusion & Reflection 365 Chapter Nine: Conclusion & Reflection 366 ? ? ? ? [9.5] Implications for Design Practice and Pedagogy [9.6] Conclusion Chapter Nine: Conclusion & Reflection 367 Bibliography 369 Breast Cancer & Medicine 370 371 372 373 374 Health Literacy, Patient Communication & Patient Engagement 375 376 377 378 Design Thinking, Human Centred Design, Systems Analysis & Related Methodology 379 380 381 382 383 Cognitive & Visual Psychology 384 385 Online Media & Health Information 386 Breast Cancer Materials, Medical Illustration Sources & Campaigns 387 Interviews & Feedback 388 Appendix 2 Appendix Table of Contents A. Three phases of design and research in this project p. 3 B. Survey 1: Patient Knowledge p. 6 C. Survey 2: Results of Visual Interpretation of Symptoms p. 26 D. Survey 3: Raw Data For Patient Knowledge Follow-up p. 32 E. Survey 4: Raw Data For Visual Interpretation Follow-up p. 40 F. Website feedback from a cancer radiologist p. 60 G. History of text changes to the breast cancer leaflet p. 64 H. Interview with mammography technicians p. 67 I. Website development timeline p. 70 J. Comments from web visitors p. 71 K. Copy of ethics letter from university ethics committee p. 76 L. Agreement for using the materials by third parties p. 77 3 [A] Three phases of design and research in this project ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? 4 ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? 5 ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? 6 [B] Survey 1: Patient Knowledge Welcome to the Worldwide Breast Cancer Survey: "Are you Breast Cancer Aware?" This survey has 20 questions, and takes 5-10 minutes to complete. Filling out this survey will help educators learn what information is being understood correctly, and which information needs to be brought to the public better. For this survey to be accurate, do not look up the answers to the questions online during the quiz. Otherwise, this would be a survey of how good your web hunting skills are. :) At the end of the quiz, you will be taken to a page with answers to each question. Thank you for your help and participation to help breast cancer education and awareness. Let's begin! 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 [C] Survey 2: Results of Visual Interpretation of Symptoms Want to fight breast cancer today? Take 5 minutes to answer this quiz and make a difference! I want to know what words you think describe each sign of breast cancer in the poster below. Write down whatever comes to mind! The answers will be used to see if the images in this poster are communicating correctly to different types of people, and that includes you! The answers will be used to make improvements or to verify the accuracy of the image. All responses will be anonymised for publication. Thanks for your help in improving breast cancer awareness! Sincerely, The Mayor Take a few minutes to compare the lemons, then tell me what sign you think each are describing by writing your answer in each question's box. It is okay to use several words to describe an image if needed. 27 28 29 30 31 32 [D] Survey 3: Raw Data For Patient Knowledge Follow-up Thank you for taking this survey on breast cancer awareness in the UK. All results will be kept anonymous, and your time in helping improve breast cancer awareness is very much appreciated! The survey takes about 5 minutes to complete in total. Make sure to note if questions allow for multiple answers. My contact information is included in this email if you have any questions or concerns. 33 34 35 36 37 38 39 40 [E] Survey 4: Raw Data For Visual Interpretation Follow-up Introductory letter to participants: Thank you very much for offering to participate in this breast cancer awareness survey. All information you supply will be anonymous and kept confidential. It is also voluntary. This survey is 20 questions long and will take 5-10 minutes to complete. You will be asked to look at a few images then give your feedback. It's that simple. You will not be able to go back to previous pages in this survey, so make sure that you are satisfied before moving to the next page. There will also be a space to leave comments at the end of the survey. Thank you for your participation. Please feel free to email this survey on to a friend as well! Corrine Beaumont, PhD Student Buckinghamshire New University 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 [F] Website feedback from a cancer radiologist 61 62 63 64 [G] History of text changes to the breast cancer leaflet 65 66 67 [H] Interview with mammography technicians 68 69 70 [I] Website development timeline 71 [J] Comments from web visitors 72 73 74 75 76 [K] Copy of ethics letter from university ethics committee 77 [L] Agreement for using the materials by third parties AGREEMENT: 1) All credit lines must stay in place on the materials. 2) Do not change any content or images. (If there is something that you feel needs changed on the pamphlet, let me know and I'll make the changes.) 3) This is to be used for a one-time campaign reaching less than 2500 people, personalized for one organization. If you would like to use this for an additional purpose, or again in the future, it will have to be repurchased. 4) This will only be used by your organization and this press file will not be given to others. All uses should be inline with the Creative Commons attribution, no derivatives, non-commercial guidelines (creativecommons.org). 5) The designer is not liable for the use or misuse of information contained or omitted in these materials. *By downloading these files attached you agree to these guidelines. Thanks!