User-Centered Design for Digital Patient-Navigation Tools in Oncology: Scoping Review

Introduction

• Cancer navigation programs support access and continuity by helping patients overcome care barriers and manage needs across the cancer-care continuum.Reported benefits include improved engagement and treatment completion, reduced diagnostic delays, and support for logistical and social needs.Source: Introduction · p. 2
• Navigation design and delivery vary widely, complicating multidisciplinary coordination and raising financial-sustainability concerns for care centers.The review frames understanding sociotechnical factors and workflows as relevant to optimizing navigation programs.Source: Introduction · p. 2
• Poor design, low usability, and weak user engagement can leave digital tools misaligned with both patient needs and clinical workflows.Patients may disengage from unintuitive apps, while navigators may find systems incompatible with workflows.Source: Introduction · p. 2
• Cancer care involves patients, caregivers, and clinicians facing different burdens, making intuitive, accessible, and emotionally supportive tools important for usability and coordination.Patients navigate multiple treatments and providers, caregivers face emotional and logistical burdens, and clinicians manage heavy workloads.Source: Introduction · p. 2
• The review maps UCD/HCD application across development and implementation of digital cancer-navigation tools, rather than evaluating their effectiveness.It examines study characteristics, navigation functions and modalities, design processes and methods, and UCD/HCD application.Source: Introduction · p. 2

Overview

• The scoping review followed Joanna Briggs Institute methodology and PRISMA-ScR guidelines.Ethical approval was not applicable because the study analyzed previously published literature without human participants.Source: Overview · p. 3

Search Strategy

• The team searched seven databases for peer-reviewed studies published from January 1, 2015, to July 30, 2025, using cancer-navigation, digital-health, and UCD/HCD concept blocks.The search strategy was developed iteratively, with database-specific controlled vocabulary and syntax adaptations where available; no formal librarian consultation was conducted.Source: Search Strategy · p. 3

Eligibility Criteria

• Eligible studies described cancer-navigation functions, included at least one UCD/HCD activity, involved patients, caregivers, or navigation personnel, and were original peer-reviewed research or design case studies in English.Studies unrelated to oncology navigation, without described UCD/HCD processes, or published as gray literature and other excluded formats were omitted.Source: Eligibility Criteria · p. 3

Study Selection

• Reviewers used Covidence for staged title-and-abstract and full-text screening, then added studies through backward and forward citation snowballing.Two reviewers screened independently and resolved disagreements through discussion, with a third reviewer available for arbitration.Source: Study Selection · p. 3

Definitions and Conceptual Framework

• The review treated mHealth as a mobile-device-supported subset of digital health and examined UCD/HCD across discovery, design, prototyping, evaluation, and implementation.Design methods included activities such as interviews and usability testing; participatory methods involved stakeholders as active contributors, while implementation concerned real-world deployment and integration.Source: Definitions and Conceptual Framework · p. 3

Data Extraction

• Two reviewers independently charted bibliographic, study, participant, tool, design-activity, navigation-task, and outcome data, reconciling discrepancies by consensus.Reported outcomes included usability measures, engagement, navigator workload, and clinical indicators.Source: Data Extraction · pp. 3–4

Data Analysis

• The qualitative synthesis used an inductive approach to organize extracted patterns into four domains: study characteristics, navigation functions and modalities, design processes and methods, and conceptualizations of navigation.Domains were refined iteratively to create a coherent, nonoverlapping structure.Source: Data Analysis · p. 4
• The analysis paired thematic synthesis with descriptive summaries of publication year, geography, cancer type, and digital modality; Table 1 summarizes thematic findings and Figure 1 depicts search and screening.Study characteristics are summarized in Table S1 in Multimedia Appendix 2.Source: Data Analysis · p. 4, Figure 1 · p. 4

Overview

• 36 studies met the inclusion criteria; the synthesis covered study characteristics, navigation functions and modalities, design processes, and UCD/HCD application.Sixteen studies were retained after primary screening, with 20 additional studies found through bidirectional snowballing.Source: Overview · p. 4
• Iterative prototyping and usability testing were common, while discovery and implementation phases and participatory methods were rarely included.Participatory approaches included co-design workshops, journey mapping, and multistakeholder sessions, but only a small number of studies reported them.Source: Overview · p. 5
• Tools focused mainly on education and communication, with limited coverage of financial, logistical, or psychosocial barriers and few integrated or multimodal systems.The review identified opportunities to integrate features addressing financial needs, transportation, and emotional support.Source: Overview · p. 5
• Usability and satisfaction were common outcomes, but real-world evidence of improved care continuity and system-level effectiveness was limited.Few studies assessed navigation effectiveness, coordination, or clinical outcomes; equity, timeliness, and continuity were rarely evaluated.Source: Overview · p. 5
• UCD reframed navigation in some studies as communication, coordination, and empowerment, rather than only wayfinding.Some studies conceptually broadened navigation toward empowerment and communication.Source: Overview · p. 5

Study Characteristics

• Most studies addressed all adult cancers (16/36, 44.4%) or breast cancer (8/36, 22.2%); caregivers and navigators were considered in only 6/36 (16.7%) and 2/36 (5.6%), respectively.Studies were concentrated in the United States (17/36, 47.2%), the Netherlands (7/36, 19.4%), and Canada (3/36, 8.3%).Source: Study Characteristics · p. 5

Navigation Purpose

• Education and information provision was the most common navigation function (23/36, 63.9%), while financial or insurance navigation and transportation or logistics each appeared in 1/36 (2.8%) studies.System navigation or access to care and patient-to-provider communication each appeared in 21/36 (58.3%) studies; care coordination appeared in 20/36 (55.6%).Source: Navigation Purpose · p. 5

Type of Digital Tools

• Web platforms (18/36, 50%) and mobile apps (17/36, 47.2%) dominated, while software prototypes and telehealth or video tools each appeared in 1/36 (2.8%) study.Examples included patient-facing web and mobile tools as well as mPCL, a mobile and web application supporting coordinated palliative care in Tanzania.Source: Type of Digital Tools · p. 6

UCD/HCD phases

• UCD/HCD was applied selectively at one or more phases, rather than through a linear or standardized sequence.The review defined discovery, design and prototyping, testing, and implementation as distinct phases for examining design maturity.Source: UCD/HCD Phase and Methods Used · p. 6

Discovery

• Discovery activities appeared in 17/36 (47.2%) studies, including work on navigation workflows, childhood cancer survivorship, and oncology nurses’ perspectives.Examples included Carr et al, Ankrah et al, and Lau and Loiselle.Source: UCD/HCD Phase and Methods Used · p. 6

Design and prototyping

• Design and prototyping appeared in 19/36 (52.7%) studies, often using user feedback to refine functional systems and features.CMyLife and iNNOVBC were examples of iterative refinement of navigation, personalization, and care coordination features.Source: UCD/HCD Phase and Methods Used · p. 6

Testing

• Testing was reported in 23/36 (63.8%) studies, making it the most consistently reported phase; ASyMS used think-aloud usability testing to refine symptom reporting.Testing included usability evaluations and pilot studies assessing feasibility, acceptability, and workflow fit in controlled or limited real-world settings.Source: UCD/HCD Phase and Methods Used · p. 6

Implementation

• Implementation was reported in 7/36 (19.4%) studies, and feedback at this phase identified system-level challenges such as training needs and resource constraints.The review describes implementation as deployment and integration into routine clinical workflows or operational care settings.Source: UCD/HCD Phase and Methods Used · p. 6

Design methods and stakeholder engagement

• Interviews were the most frequent method (25/36, 69.4%), while participatory design sessions appeared in 2/36 (5.6%) studies and co-design workshops in 1/36 (2.8%).OncoKompa and MijnAVL used interviews and usability testing; StressProffen and mPCL illustrate more systematic or participatory stakeholder involvement.Source: UCD/HCD Phase and Methods Used · pp. 6–7

Overview

• UCD/HCD most often served as a practical strategy for usability and satisfaction assessment, patient-centered design decisions, and iterative prototyping and testing.Usability testing also surfaced concerns about patient burden, tool fatigue, timing, relevance, and privacy.Source: Overview · p. 7
• Fewer studies involved caregivers, clinicians, or navigators, or used design methods to reconceptualize navigation as information exchange, communication, and coordination.The review concluded that system-level outcomes, multistakeholder involvement, and real-world implementation received less attention.Source: Overview · p. 7

Outcomes as Navigation Constructs

• Usability (28/36, 77.8%) and satisfaction (26/36, 72.2%) were measured more often than navigation effectiveness (17/36, 47.2%) or patient engagement (13/36, 36.1%).Usability and satisfaction commonly served as proxies for the overall success of cancer-navigation tools.Source: Outcomes as Navigation Constructs · p. 7
• Clinical use (9/36, 25%) and health professional engagement (6/36, 16.7%) were less assessed, and implementation logistics appeared in 5/36 (13.9%) studies.Ho et al reported improved access, remote symptom management, and patient prioritization; Nikkhah et al highlighted coordination and shared responsibilities.Source: Outcomes as Navigation Constructs · p. 7
• Few studies assessed system-level outcomes such as timeliness, collaboration, or equitable access; MM E-Coach initiated a randomized clinical trial to evaluate clinical effectiveness.mPCL [23] required further evaluation of effectiveness and sustainability in remote, resource-limited settings; SCOPE was deployed for 24 months in 6 cancer clinics.Source: Outcomes as Navigation Constructs · pp. 7–8

Levels of Stakeholder Engagement in UCD/HCD

• Most studies centered patients, while fewer included clinicians, caregivers, and navigators whose input surfaced workflow, coordination, and infrastructure factors.Multistakeholder studies also addressed caregiver responsibilities and broader organizational and technological constraints.Source: Levels of Stakeholder Engagement in… · p. 8

Iteration and Responsiveness

• Iterative prototype testing and user feedback refined tools, identifying usability problems and informing changes to interfaces, content, FAQs, and hyperlinks.Examples included data-entry and workflow-guidance challenges in StressProffen and CMyLife, and usability improvements in MijnAVL.Source: Iteration and Responsiveness · p. 8

Redefining Navigation Through Design

• Some studies framed navigation as information exchange, communication, and care coordination rather than only scheduling or wayfinding.Patient-reported outcomes supported communication and timely intervention, while distress management and symptom-monitoring tools incorporated broader support.Source: Redefining Navigation Through Design · p. 8

Principal Findings

• Pediatric and rare cancers and low- and middle-income settings were underrepresented, limiting the evidence base's generalizability to those contexts.The review also notes that most studies focused on adult populations in high-income countries.Source: Principal Findings · p. 9, Strengths and Limitations · p. 9

Strengths and Limitations

• The review was limited to English-language publications from 2015 to 2025, required explicit UCD/HCD terminology, and conducted no formal quality appraisal.Consequently, relevant differently labeled studies may have been excluded, and the strength of evidence for individual findings could not be assessed.Source: Strengths and Limitations · p. 9

Future Directions

• Future work should extend participatory and iterative design from discovery through routine-care implementation and include diverse stakeholders and contexts.Suggested approaches include journey mapping, co-design workshops, and multistakeholder field trials.Source: Future Directions · p. 10
• Evaluation should move beyond usability and satisfaction to assess coordination, timeliness, continuity, equity, and navigation effectiveness.The review notes that these system-level outcomes were assessed less often than usability and satisfaction.Source: Future Directions · p. 10, Conclusions · p. 10

Principal Findings

• UCD/HCD application was concentrated in adult cancers, high-income settings, and informational functions, with fewer studies addressing coordination, equity, and implementation.Caregivers, navigators, and clinicians were also underrepresented in design processes.Source: Conclusions · p. 10

Conclusions

• The authors conclude that UCD/HCD has shaped usable, patient-responsive tools, but broader coordination, equity, and implementation challenges remain insufficiently addressed.They call for equitable, context-sensitive systems spanning diverse cancer types and settings.Source: Conclusions · p. 10

• Multimedia Appendix 1 is the PRISMA-ScR checklist.Source: Multimedia Appendix 1 · p. 11

• Multimedia Appendix 2 provides the summary of included studies and full search strategies.Source: Multimedia Appendix 2 · p. 11

• HCD means human-centered design, mHealth means mobile health, PRISMA-ScR means Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews, and UCD means user-centered design.Source: Abbreviations · p. 14