Introduction

Breast cancer is the most common cancer in Canadian women, apart from nonmelanoma skin cancers, and is the second leading cause of cancer-related deaths []. Approximately 1 in 8 Canadian women will develop breast cancer during their lifetime [,]. Although multidisciplinary care and systemic therapies have improved breast cancer outcomes over the past decade [], these advances have introduced new complexities for both patients and health care providers.

Patients are now expected to make timely and informed decisions, interpret detailed medical information, and coordinate care across multiple services and providers [,-]. This can lead to confusion about procedures, points of contact, and treatment-related side effects, sometimes resulting in delays in care []. For health care providers, these complexities increase the demand for efficient documentation, coordinated communication, and real-time access to patient information [,]. Clinical data are often fragmented across noninteroperable health information systems, and care processes are heterogeneous and complex to manage, resulting in high levels of administrative and role-related burden [,].

Digital health platforms offer a promising solution to streamline care delivery, reduce manual workload, and enhance communication among health care team members []. However, most available platforms are not designed for provider use and are poorly integrated into clinical workflows []. This results in providers relying on manual tracking, which can lead to redundant documentation and time-consuming phone-based follow-up []. Although nurse navigation programs help bridge some of these challenges in oncology practice by supporting patients throughout their treatment journey, the model is labor-intensive [,]. Navigators are often required to contact patients at multiple points in their journey, without standardized tools to streamline navigation tasks or optimize workflow within and across clinical settings [,].

One strategy to support health care teams and reduce administrative burden is to leverage integrated digital platforms that consolidate patient care information in a single system. Digital platforms can reduce the need to search across multiple sources and allow providers to focus on direct patient care []. Platforms that coordinate tasks across teams can also reduce fragmentation within the health care system and enhance care continuity [].

To address these challenges, our team developed “MyJourney,” a digital oncology platform that supports breast cancer care across the continuum, from diagnosis through survivorship. The platform was initially developed by a team of software developers and design experts for North York General Hospital (NYGH) in Ontario, Canada. Following prototype development, the platform underwent iterative refinement through a user-centered design process that engaged a broad group of interest-holders, including breast cancer providers, patients, researchers, app developers, and design experts. Interest-holder engagement began in 2017, and platform development launched in 2019. MyJourney includes three integrated components: (1) a Clinical Navigation Tool that allows care teams (including nurses, pharmacists, oncologists, and surgeons) to triage, monitor, and document patient care; (2) a Multidisciplinary Cancer Conference Tool that facilitates collaborative case planning, treatment decision-making, and reporting; and (3) a patient-facing mobile app that provides personalized treatment summaries, tailored education, appointment reminders, and real-time updates to promote engagement and self-management. The platform was designed to address dual needs. First, it streamlines workflows, reduces documentation burden, and supports team-based coordination for providers. Second, it centralizes health information, treatment plans, and appointments into one accessible location for patients diagnosed with breast cancer. These functions align with broader health system priorities, including those reflected in the Quintuple Aim, by aiming to improve both provider experience and patient outcomes and experiences [].

The objectives of our work were (1) to understand the breast cancer journey, gaps in care, and the needs of patients at the Breast Diagnostic Centre (BDC) to inform the design of the patient-facing component of MyJourney; (2) to map workflows, identify barriers, and guide local adaptation of MyJourney before its launch at the NYGH Chemotherapy Clinic (CC); and (3) to evaluate the implementation, usability, and perceived utility of the Clinical Navigation Tool component of MyJourney at both the BDC and CC.

MethodsStudy DesignOverview

We conducted a 3-phase, multimethod study that used both qualitative and quantitative methods (). Phase 1 patient interviews (2018‐2019) informed the initial design of MyJourney’s Clinical Navigation Tool and patient-facing app. The Clinical Navigation Tool was first implemented at the BDC in September 2022, providing a mature implementation in a diagnostic-focused setting. Lessons learned from this implementation (eg, around appointment visibility, task lists, and navigation touchpoints), together with phase 2 preimplementation workflow interviews at the CC, informed the subsequent localization and configuration of MyJourney for the treatment-focused CC in 2024. More specifically, the below sections highlight the design for each of the 3 phases.

‎Figure 1. Study design schema. NYGH: North York General Hospital. Phase 1

To inform the structure and content of MyJourney (Clinical Navigation Tool touchpoints and patient-facing mobile app), we conducted qualitative interviews with patients at the NYGH BDC to map the breast cancer journey from prediagnosis through survivorship and to inform the structure and content of MyJourney (Clinical Navigation Tool and patient-facing mobile app). We used the interpretive description of Thorne [], grounded in naturalistic inquiry and recognizing the constructed and contextual nature of human experience. It seeks applied understanding that supports practical decision-making [] and centers on participants’ experiential accounts rather than testing or building theory, as it is grounded in practical relevance [].

Phase 2

To adapt MyJourney to the NYGH CC, we conducted preimplementation interviews with staff to map workflows and staff roles, identify barriers, and tailor MyJourney’s features to support local adaptation (November 23‐29, 2023). We used the same interpretive description approach as in phase 1, which uses low-inference interpretation (ie, description) to enable the researcher to remain close to the data []. In this approach, facts are presented as a comprehensive summary in everyday language from the participants’ perspectives, serving both as an output of the research and as recommendations for future research [-]. We used qualitative results to iteratively implement the Clinical Navigation Tool component of MyJourney (December 2023-February 2024). This involved installing the MyJourney technology at the CC (integrating within their electronic medical record system) and training users (nurses and administration staff) on how to use the system. Once installed, MyJourney launched for use on March 4, 2024.

Phase 3

To evaluate the implementation, usability, and perceived utility of MyJourney’s Clinical Navigation Tool at the CC, we conducted a 6-week, iterative, 3-staged evaluation. One week after implementing the Clinical Navigation Tool, we administered a usability survey to MyJourney users (charge nurses and administrative staff; stage 1). After 1‐2 days, we conducted one-on-one interviews with these participants to gain a more in-depth understanding of their experiences, including workflow alignment (using survey findings as a starting point), and to identify any challenges and suggested recommendations to address them (stage 2). Over the next 5 weeks, we used survey and interview results to further refine the Clinical Navigation Tool. At 6 weeks of follow-up, we readministered the stage 1 usability survey to determine whether iterative improvements translated into enhanced usability (stage 3). We also administered the usability survey (stage 1) and interviews (stage 2) to MyJourney users at the BDC clinic to get an in-depth understanding of their user experience at that site since its implementation (September 2022). For interviews, a qualitative description approach was used to enable the researcher to remain close to the data []. In this approach, facts are presented as a comprehensive summary in everyday language from the participants’ perspectives, serving both as an output of the research and as recommendations for future research []. This overall evaluation approach was guided by the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) implementation framework, which considers individual, organizational, and contextual factors to shape the implementation and sustainability of innovations []. For phase 3, RE-AIM primarily informed our focus on implementation (usability, workflow fit, and fidelity of use) and maintenance (patients’ and clinicians’ perceived likelihood of continued use and ongoing integration into routine care). Reporting of this study was guided by the SRQR (Standards for Reporting Qualitative Research) [].

Ethical Considerations

This study was conducted at North York General Hospital, diagnostic breast cancer and chemotherapy clinics. Informed consent was obtained from all participants across the 3 phases. All data were anonymized using study ID numbers and stored in secure locations. Data collection occurred between 2019 and 2024. Ethics approval was granted by the NYGH Research Ethics Board (protocol #18‐001 and #0326).

Setting, Intervention, and Implementation

Our study took place at 2 ambulatory oncology settings of the NYGH (a tertiary-level, academic-affiliated community hospital in Toronto, Ontario, Canada): the BDC and the CC []. The BDC is a specialized ambulatory diagnostic service within the Breast Centre that provides comprehensive assessment for individuals with suspected or confirmed breast cancer, identified through abnormal clinical examination and/or breast imaging, serving approximately 1500 new patients seen annually. In contrast, the CC is an outpatient systemic therapy unit that delivers chemotherapy and supportive care to patients with confirmed cancer diagnosis (including early-stage, locally advanced, and metastatic breast cancer) coordinated by charge nurses following consultation with medical oncology, with pharmacists providing patient education and counseling. Whereas the BDC primarily serves patients in the diagnostic and decision-making phase (often pretreatment), the CC primarily serves patients in active treatment, with more advanced or definitively staged disease and correspondingly different informational, supportive, and symptom-management needs. Our implementation work, therefore, involved adapting the intervention from a diagnostic-focused setting (BDC) to a treatment-focused setting (CC), taking into account differences in patient flow, acuity (eg, treatment-related toxicities), and longitudinal relationships with the oncology team. The focus of our evaluation was the Clinical Navigation Tool within the MyJourney platform. The tool was first implemented at the BDC on September 19, 2022, as part of a hospital-wide initiative to improve cancer care delivery. It was subsequently adapted for use at the NYGH CC on March 4, 2024. The BDC manages approximately 700 patients with breast cancer per year.

Participant RecruitmentPhase 1 (BDC Patients)

We used purposive sampling with convenience and self-selection elements to identify eligible participants: English-speaking adults diagnosed with breast cancer who were former or current patients receiving care at the BDC and able to provide informed consent []. To obtain a wide range of patient experiences, recruitment was conducted in a multipronged approach. For example, we recruited participants at the end of a 1-day workshop for newly diagnosed patients by displaying posters in the clinic waiting rooms. Second, we contacted patients who had previously indicated their willingness to participate in any future research studies. All participants spoke English and provided informed consent.

Phases 2 and 3 (Providers and Staff)

Across phases 2 and 3, we used purposive sampling within each clinic [] to invite all current or prospective MyJourney users (nurses, pharmacists, and administrative staff) at the BDC and the CC, with the goal of capturing the full range of user perspectives rather than thematic saturation []. We did not recruit oncologists or surgeons for phase 2 because at the CC, these providers primarily interact with MyJourney through the Multidisciplinary Cancer Conference Tool and the hospital electronic medical record rather than as routine users of the CC Clinical Navigation Tool. Charge nurses and oncology pharmacists are the primary day-to-day users of the Clinical Navigation Tool, responsible for coordinating chemotherapy visits, managing treatment-related symptoms, and delivering patient education and counseling. Potential participants were invited via targeted email with support from senior clinic leaders. Written informed consent and demographic data were collected using Qualtrics. One participant did not consent to the use of direct quotes.

Data Collection

Across phases, data collection included semistructured interviews or online surveys. The research team (IH, JM, MK, LH, and KM) developed and pilot-tested the instruments to ensure clarity, appropriateness, and alignment with the study objectives.

Phase 1

A semistructured interview guide was created and modified iteratively (). In interpretive description, insights from early interviews inform the design of subsequent interviews, including the interview guide, which begins with broad, open-ended questions and evolves as themes, categories, and theoretical constructs are developed through ongoing analysis []. Two experienced qualitative researchers (LH and KM) conducted interviews with women who were diagnosed with breast cancer and were former or current patients, in person at the BDC. Interviews lasted 60 to 90 minutes. During the interviews, participants were asked to map out their breast cancer journey, starting from the time before their diagnosis to the present. For example, they were asked about their activities, the health professionals they interacted with, their feelings, the information they received, and their communication needs at each stage of their journey. Participants were encouraged to take the conversation in new directions and explore concepts not initiated by the interviewers. Our goal was to learn from participants’ breast cancer journeys at the BDC to identify gaps in care and their information and support needs, in anticipation of developing a patient-facing app that would address these needs as a complement to the Clinical Navigation Tool aimed at providers.

Phase 2

A semistructured interview guide was developed (for each of the pharmacist and nurse participants) by 3 researchers (IH, JM, and MK; ). Interviews were conducted in person or virtually (via Zoom [Zoom Video Communications] or Microsoft Teams) in 30-minute time blocks, at the participant’s preference. Interview guides followed a semistructured format informed by the RE-AIM framework [] (ie, to help formulate questions that would elicit responses grounded in implementation theory). To maximize participation, we offered flexible participation options (a single 1-hour session or two 30-minute sessions). Interview questions focused on (1) participants’ roles and responsibilities, (2) experience using MyJourney (including duration and frequency of use; how it supports tasks, workflows, and patient management; and whether it meets their needs), (3) MyJourney feature-specific feedback, (4) benefits and challenges of using MyJourney and related recommendations, (5) experience with implementation (what worked well, what did not, any disruptions to workflow, and suggestions for future implementation), and (6) challenges experienced in each of these areas along with associated recommendations, including feedback on how MyJourney could be tailored to support their work better.

Phase 3

The research team developed an online survey for each of the BDC and CC and pilot-tested it for understandability (). Surveys were tailored to different audience groups (eg, nurses and clinic staff) and administered via Qualtrics to study participants to collect data on demographics and usability. Usability and user experience were assessed using the System Usability Scale (SUS) [,] and the technology acceptance model, which measures ease of use and usefulness of a technology-based innovation [,]. Sampling was consistent with established usability guidance that 3‐5 users are typically sufficient to identify most high-severity usability problems in a given design iteration []. As such, we aimed to reach at least 3 participants per site who had access to and experience using the platform but were constrained by the number of eligible users during early implementation (2 patients with breast cancer per site). As a result, we treated this as an initial, depth-oriented usability assessment focused on uncovering major usability issues and gathering rich feedback to guide subsequent refinements, rather than on producing generalizable estimates of usability metrics. We also assessed perceptions of workflow alignment, ratings of specific MyJourney features, and overall satisfaction. Demographic variables included age, sex, gender, ethnocultural background, and years in role. In addition, survey responses (stage 1) were used to tailor interview probes for stage 2. For example, if a participant rated a MyJourney feature poorly, the interview explored the reasons and discussed possible solutions to address them.

Data Analysis and SynthesisQualitative Data

All interviews were digitally recorded, transcribed verbatim, and reviewed for accuracy. For qualitative analyses across all phases, we used an iterative, inductive, and interpretive process to construct our understanding of MyJourney. Within the interpretive description methodology of Sandelowski [], qualitative data analysis unfolds as an iterative, inductive, and reflexive process. It begins with immersion in the data to gain contextual understanding, followed by broad initial coding to capture patterns without imposing rigid categories. In phase 1, reviewers (LH and KM) used constant comparison analysis, repeatedly contrasting data segments and cases to develop, refine, and validate emerging insights and themes []. This process allowed us to move beyond description, producing a practice-oriented interpretation that informed actionable insights about how MyJourney should be constructed. The codebook was developed iteratively with each subsequent transcript, and its emergent structure became more focused as categories and themes developed. In phase 2, we used directed content analysis, combining deductive coding (guided by RE-AIM and study objectives) and inductive coding to capture themes emerging from participant narratives []. Reviewers in this phase (IH, JM, and MK) independently coded initial transcripts and collaboratively developed an initial codebook that evolved as more data were analyzed and was structured around barriers and recommendations. The remaining transcripts were coded in duplicate by applying the codebook. Discrepancies were resolved by consensus or adjudication with a third reviewer (MK). Thematic categories were refined through team discussions to ensure clarity, distinctiveness, and alignment with the study objectives. Data were then organized by clinical site and mapped onto a figure depicting the workflow, allowing the clinical context in which MyJourney would be used to be identified. Open-ended survey responses were independently coded by 2 reviewers using the same coding structure.

Data Synthesis

Across phases, coded qualitative data were summarized in tables organized by challenges, recommendations, and, where relevant, enabling factors. Representative quotations were selected to illustrate key findings.

Quantitative Data

Survey data were analyzed descriptively using Microsoft Excel. Measures included frequencies, percentages, means, medians, SDs, and IQRs. SUS scores were interpreted using the following benchmarks: >68 (above average), >70 (acceptable), >74 (excellent), and >85 (best imaginable) []. Mean scores and SDs were calculated for technology acceptance model dimensions []. Due to the small sample size, no inferential statistics were conducted.

Researcher Characteristics and Reflexivity

The evaluation team comprised researchers who identified as female and women from health services and implementation science, who were not involved in the design or delivery of MyJourney. To mitigate potential bias arising from the dual role of a coprincipal investigator (FO) as a platform developer, data collection and analysis were conducted by team members independent of platform design and operations. The interviewer had no prior relationship with the participants. A note-taker attended phase 3 interviews and offered follow-up questions where appropriate. Team members kept reflexive journals and audit trails and met regularly to review assumptions and ground analytic decisions in participant accounts. Member checking was not feasible. Credibility was supported through rich description and direct quotation.

ResultsPhase 1: Predesign Engagement With Patients at the Breast Diagnostic ClinicParticipant Characteristics

In total, 13 participants consented and were interviewed between 2018 and 2019 (). The mean age was 56 years (range 42‐67 years), all identified as female and a woman, and most identified as White (5/13, 38.5%), South Asian (2/13, 15.4%), and Chinese (2/13, 15.4%), and 1 (7.7%) participant each identified as Jewish, Latin American, West Asian, or White-Aboriginal. The majority of participants (9/13, 69.2%) reported an annual household income of ≥US $659,200. All participants spoke English, and 3 (23.1%) individuals spoke a second language. Of the 12 who specified education, most (8/12, 66.7%) reported at least a bachelor’s degree.

Table 1. Phase 1 participant characteristics.CharacteristicValues (n=13), n (%)Age range (n=10)41‐50 years2 (20)51‐60 years4 (40)>60 years4 (40)Prefer not to say3 (23.1)Biological sexFemale13 (100)Gender identityWoman13 (100)Ethnic or racial backgroundChinese2 (15.4)Jewish1 (7.7)Latin American1 (7.7)South Asian2 (15.4)West Asian1 (7.7)White5 (38.5)White-Aboriginal1 (7.7)Education (n=12)University—bachelor or more8 (66.7)College diploma3 (25)University—no degree1 (8.3)Prefer not to answer1 (7.7)Languages spokenEnglish13 (100)Arabic1 (7.7)Russian1 (7.7)Chinese1 (7.7)Household income (n=10)US $110,0004 (40)US $66,000-$88,0003 (30)US $88,000-$110,0002 (20)US $0-$22,0001 (10)US $22,000-$66,0000 (0)Prefer not to answer3 (23.1)Stage of breast cancer journey (n=13)Prediagnosis2 (15.4)Diagnosis3 (23.1)Treatment4 (30.8)Survivorship4 (30.8)

aPercentages may not add to 100% due to rounding.

bThe totals in this section of the table are greater than the sample size, and the percentages add to more than 100%.

Stage of Breast Cancer Journey

Participants described different “phases” of their journey, each with its own associated challenges and communication needs (). The phases identified were “prediagnosis,” “diagnosis,” “treatment” (including active management strategies such as surgery, chemotherapy, and radiation), and “survivorship.” These labels mark the key clinical activities during the respective time frame and reflect the clinical perspective that patients with breast cancer are expected to adopt. The majority of participants were at the treatment (4/13, 30.8%) or survivorship (4/13, 30.8%) stage, followed by the diagnosis (3/13, 23.1%) and prediagnosis (2/13, 15.4%) stages. However, participants acknowledged that these phases were not always linear, and not all patients go through all phases. Participants reported that each phase had distinct informational and emotional needs, which were incorporated into the tool’s design features. summarizes the themes and relevant quotes describing participants’ experiences according to their breast cancer journey stages.

‎Figure 2. Stages of the typical breast cancer journey as reported by interview participants. Summary of Qualitative ResultsOverview

We developed 8 overarching themes that describe participants’ experiences across the breast cancer care trajectory at the BDC and CC at NYGH ().

Table 2. Overarching themes that describe participants’ experiences across the breast cancer care trajectory at the North York General Hospital Breast Diagnostic Centre (BDC) and Chemotherapy Clinics.Theme and subthemeDescriptionIllustrative quotes1. Care coordination and workflowsBDC workflows and processesPerceptions of the BDC as coordinated, efficient, and well-organized.“From the time from mammogram to surgery was only 1 month—that was an amazing experience” [Participant 7].“They have a very good process ... After your appointment [they] give you another one ... If you need a referral, they have already sent the referral ... It’s a very good process and I don’t want it to change” [Participant 1].Transitions and follow-upBreakdowns when moving between BDC, chemo, radiation, home care, and primary care, with patients worrying that things will be missed.“At the BDC it was a real team approach ... Then, when I went to chemo there was no team approach and it all went downhill from there” [Participant 4].“The imaging follow up just doesn’t happen. I have to orchestrate it” [Participant 4].2. Communication and information flowReceiving diagnosisHow, where, and by whom the diagnosis is communicated, and its emotional impact.“When I got the phone call from my doctor, I was alone at home and told about the diagnosis. That was hard. It would have been better to have someone with me” [Participant 7].“I was ‘told’ that I had breast cancer by the bone scan technician ... before I was given the official diagnosis and that was difficult to hear and very brusque” [Participant 8].Team communication and contradictionsInconsistent or conflicting information between clinicians and services, eroding trust.“There was lack of communication between groups in this hospital ... I spent the whole week panicking ... and they said ‘oh it’s fine, we have ice for you’” [Participant 4].“They are telling you it’s nothing ... They are not doing their research to understand the actual side effects of radiation ... Every time you say it, they dismiss it instead of cataloguing people’s experience” [Participant 18].Role clarity (who to call)Uncertainty about which clinician is responsible for which problems.“There were a few things that I wasn’t sure if I should go to the surgeon or the medical oncologist for ... I often wasn’t sure who to go to” [Participant 9].Tone, empathy, and respectValue placed on clear, respectful, and nondismissive communication.“We had an amazing surgeon and oncologist ... They don’t try to make you feel bad ... They never show signs of exasperation ... It’s very personalized” [Participant 1].3. Information and resource needsVolume and timing of informationTension between information overload and unmet information needs; importance of timing.“They gave me lots of information in the little bag. It was overwhelming ... When I started reading it, it was okay” [Participant 5].“The ‘welcome to breast cancer’ package ... had too much of a lumpectomy focus versus mastectomy” [Participant 4].Practical “how-to” guidanceDesire for concrete, practical advice about surgery recovery, daily logistics, and self-care.“I thought I’d get more info ... what to expect and prepare for after the surgery ... mastectomy bras, etc. I did research online and got a wedgie pillow ... grabbers ... special tables ...” [Participant 2].Understanding diagnosis and treatmentNeed to understand pathology, staging, oncotype, systemic therapies, and their implications.“I was trying to understand the HER2. I found this confusing ... It would be good to ... tell us which sites to go to, and not just Google” [Participant 9].Survivorship “what happens after”Lack of clear survivorship plans, follow-up schedules, and guidance for life after treatment.“After the treatments were over, I was left alone. I want to know, what happens after cancer? ... Now that I have had cancer, it has changed me. How do I deal with this?” [Participant 9].Safe, reputable online informationDesire for trusted, curated web resources instead of unguided internet searches.“I was googling a lot—wish I’d had something reputable to refer to” [Participant 15].4. Digital tools and patient portalAccess to records and resultsStrong interest in a portal centralizing reports, laboratory results, and imaging.“I would like a patient portal with all of my reports and bloodwork results ... upcoming appointments, information on drugs I’m taking, and resources, like Wellspring” [Participant 6].“She loves Sunnybrook mychart ... she can bring the results to other medical appointments, so they have the information” [Participant 4].Appointments and chronologyDesire for a clear visual timeline of appointments and treatments.“Would like to see the chronology of her appointments and treatments in a” [Participant 7].Laboratory result “lookup”Need for plain-language explanations of test results.“What about a lookup feature for what the lab results all mean—this would be great, so you don’t have to go Google” [Participant 8].Messaging and chatPreference for asynchronous written communication for nonurgent questions.“A good option would be to have a chat function ... I don’t necessarily need an answer right away and I don’t want to talk on the phone” [Participant 3].Technology comfort and trainingWide variation in digital literacy and format preference (portal vs paper).“I would be very interested in using the portal, but someone would have to show me how to use it because I’m not good at using computers” [Participant 5].“I am a paper person. Would like to have all the educational materials paper-based” [Participant 8].5. Experience of quality of careBDC environment and teamPerceptions of the clinic environment, staff attitudes, and teamwork.“The whole team—everybody. Every time I am here I feel that I am coming home” [Participant 1].Chemo and radiation experiencesPhysical and emotional experiences of systemic and radiation treatments.“Chemo is the worst thing ever ... The chemotherapy treatments involved long waits” [Participant 6].“The nurses there were amazing at the chemo clinic ... They really tried to make a really bad situation bearable” [Participant 4].Home care or CCACChallenges with community nursing, reliability, and competence.“CCAC came and took care of my wound. It was a comedy of errors ... They had no idea whether they were coming or going, and whether they had supplies” [Participant 4].6. Psychosocial and emotional supportDistress and uncertaintyIntense distress at diagnosis and during periods of waiting or uncertainty.“The hardest part was from when I thought I probably had breast cancer, but didn’t know for sure ... The hardest part was not knowing whether I would be able to see my son go to school” [Participant 16].Ongoing anxiety and fear of recurrencePersistent psychological impact after treatment ends.“I still struggle with the psychological aftercare ... You are always on guard for another lump” [Participant 9].Support services and gapsValue of programs like Wellspring and perceived gaps in psychosocial support.“The hospital just focuses on the body. They don’t focus on the mental and the cognitive. I was happy to find Wellspring ... I go to a lot of classes” [Participant 6].Humor and coping stylesUse of humor and individualized coping strategies.“Am I stressed, absolutely. To deal with it, I sit in the car and do stand-up humour for myself” [Participant 5].7. Patient agency and self-managementSelf-advocacy and orchestrating carePatients pushing for referrals, chasing results, and coordinating their own care.“I have to orchestrate it ... If you aren’t willing to drive the car, let me. I want my test results. I want them to be accessible” [Participant 4].Personal tracking and journalingUsing notebooks, binders, and journals to track care and questions.“After each appointment, I wrote in my book what happened. So, I have this record of what care I received” [Participant 12].Doing own research and lifestyle changeIndependent research on treatments and lifestyle changes to support recovery.“I wanted to be part of my recovery, so I did some digging and reading ... I removed sugar from my diet ... removed meat ... took 2 minute cold showers ... and drank a lot of water before chemo” [Participant 3].8. Survivorship care and transitionsWho leads survivorshipConfusion and preferences around oncologist- versus GP-led follow-up.“What happens now? Who follows me? Who do I speak with? ... There is no coordinated care. No one is in charge. It’s you” [Participant 18].“I would prefer having my GP follow me once my treatment is complete ... She phones me and tells me my results” [Participant 11].Requirements for GP-led carePerceived capabilities and training needed in primary care.“The family doctor would have to have a lot of training regarding ... post-treatment side effects ... and the softer skills side of it” [Participant 7].Long-term anxiety and follow-upOngoing fear of recurrence and desire for continued monitoring as years pass.“As the years go by, you think, nothing has happened. And you start to worry ... That’s when the anxiety starts to come back with the waiting” [Participant 13].Survivorship identity and peer supportSeeking peer support that matches age, life stage, and experience.“I would be really interested in a survivorship focus group ... After the treatments were over, I was left alone” [Participant 9].“I still haven’t found someone like me ... a mother of two young kids ... To have that kind of peer support is really powerful” [Participant 16].

aCCAC: community care access center.

bGP: general practitioner.

Care Coordination and Workflows

Participants described the BDC as a coordinated, efficient entry point into care, characterized by rapid movement from abnormal imaging to biopsy and surgery and by clear internal communication. Women emphasized short wait times and proactive scheduling of subsequent appointments and referrals, which reduced uncertainty and signaled that “the system” was functioning well. In contrast, this perceived coordination often deteriorated once patients transitioned into chemotherapy, radiation, community nursing, or primary care. Several participants reported that the “team approach” appeared to end after surgery, with no single clinician or service clearly overseeing the remainder of care. Delays in imaging follow-up, confusion around orders, and inconsistent tracking of test results were frequently described. As a result, many participants felt responsible for navigating and organizing their own care, including obtaining their results, confirming appointments, and ensuring referrals had been made, a role they found exhausting in the context of illness and emotional distress.

Communication and Information Flow

How and where the diagnosis was communicated strongly shaped participants’ early experiences. Some received the diagnosis alone at home by telephone and described this as particularly distressing; others were informed indirectly by nonphysician staff (eg, imaging technicians) before any formal consultation, which they found abrupt and insensitive. Beyond diagnosis, participants highlighted inconsistent messages between clinicians and services and poor intrateam communication, including contradictory advice between oncology and treatment units, eroding trust and increasing anxiety. Many were uncertain whether to contact their surgeon, medical oncologist, radiation oncologist, family physician, or nurse navigator when new questions or symptoms arose. At the same time, participants expressed high appreciation for clinicians who communicated in clear, plain language, invited questions, and repeated information without frustration. Participants also reported that initial information packages were sometimes overwhelming and poorly tailored (eg, lumpectomy-focused materials given to women undergoing mastectomy) and found gaps in practical “how-to” guidance (eg, what to buy and prepare before surgery, managing drains, and concrete strategies for side effects) and in survivorship-oriented information about “what happens after” treatment, follow-up schedules, and recurrence risk.

Information and Resource Needs

Information needs were complex and shifted across the cancer trajectory. Many participants recalled receiving large information packages at diagnosis that felt overwhelming or poorly tailored (eg, materials focused on lumpectomy when they were having mastectomy), even as they still lacked answers to very practical questions about what to expect after surgery and how to prepare their home. They sought clear, accessible explanations of pathology results, risk scores, and treatments, as well as guidance on what is “normal” versus concerning during and after treatment. Critically, once active treatment ended, people described a stark information void about survivorship—wanting to know what happens next, how long follow-up would last, what symptoms to watch for, and how to live with the ongoing impact of cancer. Many expressed a desire for curated, trustworthy online resources to reduce reliance on unsupervised internet searches.

Digital Tools and Patient Portal

Participants suggested that a cancer-focused portal to address multiple unmet needs in one place would be helpful. Those with experience of existing portals valued having access to laboratory results, imaging reports, and appointment lists, and being able to bring printed results to other appointments. They imagined a more tailored tool that would provide a clear chronology of appointments and treatments, explanations of laboratory values in plain language, and secure messaging or chat for nonurgent questions. However, our data also highlighted wide variation in participants’ comfort level with digital solutions: some described themselves as “information junkies” who would “be on it all the time,” while others said they would need to be walked through how to use such a system or preferred paper-based materials. Any digital solution would therefore need to support both high- and low-technology users, offer training, and coexist with paper formats rather than fully replace them. summarizes the features participants reported they would be interested in seeing in a future patient portal.

Experience of Quality of Care

The overall quality of care was experienced as uneven. Many participants spoke positively about the BDC environment, highlighting friendly staff, clean, welcoming spaces, and a sense of being “at home” and well-supported. Chemotherapy units were described as both physically and emotionally challenging, yet often made more bearable by attentive, kind nurses. In contrast, community-based home care services were frequently characterized as disorganized, inconsistent, or poorly coordinated, with missed visits, questionable technique, or lack of supplies. Long waits for some specialist appointments, crowded spaces, and privacy concerns in certain treatment areas also shaped perceptions of quality. These contrasting experiences underscored how much the attitudes, organization, and resources of specific teams influence patients’ sense of safety and trust.

Psychosocial and Emotional Support

Across the cancer journey, participants reported substantial psychosocial burden. The period between suspecting cancer and receiving a definitive diagnosis was described as especially distressing, particularly for those with young children who feared not living to see key milestones. They described intense fear and uncertainty at the time of diagnosis and during periods of waiting for test results or treatment decisions. Even after treatment, many reported ongoing psychological impacts, including heightened worry before follow-up imaging and a sense of being “on guard” for recurrence. Some participants found that strong support through community-based survivorship centers (such as psychosocial programs and survivorship classes) was essential to addressing emotional and cognitive impacts that hospital-based services, which “just focus on the body,” often neglect and do not adequately address mental health, cognitive changes, or other concerns. Participants emphasized the value of humor and individualized coping strategies, and having space for levity, storytelling, and emotional validation alongside more formal counseling or group support. Transitions into survivorship were characterized by anxiety and uncertainty about who was responsible for ongoing care. Some participants were comfortable transitioning to a trusted family physician, while others questioned whether primary care had sufficient oncology expertise and time to manage late effects and psychological needs. Many described feeling “left alone” once active treatment concluded.

Patient Agency and Self-Management

Across interviews, patient participants portrayed themselves as active agents who often had to fill gaps in the system. Many described pushing for referrals, insisting on further tests, or repeatedly calling to obtain results, reflecting both a strong desire for control and a lack of trust that the system would automatically “catch” everything. Self-management practices were common. For example, participants kept notebooks or binders to track appointments, results, and questions, and some engaged in extensive independent research on treatments, nutrition, exercise, and complementary strategies to support recovery. These behaviors were framed both as empowering and burdensome, as patients felt they “shouldn’t have to” organize their own care to this degree; yet, they would have valued tools and information that would have allowed them to do these activities more effectively.

Survivorship Care and Transitions

The transition from active treatment to survivorship was a major source of uncertainty and distress. Participants frequently reported not knowing who was now “in charge” of their care, how often they would be seen, or what tests would be done in follow-up. Some were comfortable with their family physician assuming a lead role, particularly when they had longstanding, trusting relationships and good access. However, others doubted that primary care providers had sufficient oncology-specific knowledge or time to manage their physical and psychological needs without additional training. Survivorship was also described as a distinct identity shift, whereby they no longer felt like active patients but did not feel “back to normal” either. Many sought survivorship programs, focus groups, or peer connections that recognized and supported this ongoing phase, rather than treating the end of treatment as the end of the cancer experience.

How Findings Informed the Design of the Patient-Facing App of MyJourney

Overall, participants emphasized the importance of structured follow-up plans, clear communication about recurrence risk, and accessible survivorship resources. highlights the features identified by participants as to be considered for the patient-facing app. presents the minimum viable feature set used to build the patient-facing app.

Table 3. Features that were considered in the development of the patient-facing app.App feature areaDirectly addresses participant needs or quotesTimeline and roadmapNeed for chronology, pathway or flowchart, and “knowing what happens next” including aftercare and survivorship.Results and lookupDesire for laboratory and test access, explanations (oncotype, seed lock, and radiation effects), and faster and clearer results.Messaging and routingConfusion about who to contact, wish for chat, frustration with missed callbacks, and vacation gaps.Education libraryInformation overload plus gaps; wish for curated sites, practical tips, emotional support, and survivorship information.Psychosocial or peer supportRequests for psychologists, survivorship groups, younger-women groups, peer stories, and contact.Self-management toolsPatients documenting care, tracking steps, changing diet, and orchestrating follow-up themselves.Phase 2: Preimplementation Interviews at the CCParticipant Characteristics

In total, 3 nurses and 5 pharmacists were interviewed between November 23 and 29, 2023, representing all relevant users of the MyJourney platform at the CC. Most participants (7/8, 87.5%) identified as female and a woman, aged 41‐50 years (5/8, 62.5%), primarily with a Chinese (2/8, 25%), East African (1/8, 12.5%), South Asian (3/8, 37.5%), or White (2/8, 25%) racial background. Most participants had been in their current role for under 5 years (5/8, 62.5%; ). At the CC, nurses were primarily responsible for coordinating care, managing symptoms, and answering patient inquiries. Pharmacists provided patient education, addressed treatment-related issues, secured funding, and offered tailored resources. Two pharmacist roles existed: Clinical One, who conducted scheduled education sessions before the first chemotherapy cycle, and Clinical Two, who provided chairside counseling to patients in clinical trials or to those who had not received prior education on the day of their first treatment.

Table 4. Phase 2 participant characteristics.CharacteristicValues (n=8), n (%)Age range (years)30‐401 (12.5)41‐505 (62.5)51‐602 (25)>600 (0)Biological sexFemale7 (87.5)Male1 (12.5)Other0 (0)Gender identityWoman7 (87.5)Man1 (12.5)Other0 (0)