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

Saba Kheirinejad, Brianna M White, Parnian Kheirkhah Rahimabad, Janet A Zink, Soheil Hashtarkhani, Fekede Asefa Kumsa, Rezaur Rashid, Lokesh Chinthala, Christopher L Brett, Robert L Davis, David L Schwartz, Arash Shaban-Nejad

arXiv:2608.24887v1cs.HCcs.CY

TL;DR

Digital cancer-navigation tools often have limited usability and uptake, while the use and evaluation of user-centered and human-centered design remains unclear. This scoping review mapped 36 studies and found that iterative prototyping and usability testing predominated, whereas application remained narrow across cancer types, settings, and functions.

  • Problem

    The extent to which user-centered and human-centered design principles are used and evaluated in digital cancer-navigation tools remains unclear.

  • Method

    This scoping review mapped user-centered and human-centered design applications in digital cancer-navigation tools using Joanna Briggs Institute and PRISMA-ScR guidance.

  • Results

    Across 36 studies, user-centered and human-centered design application was concentrated in adult cancers, high-income settings, and informational functions, with usability prioritized over system-level effectiveness.

  • Takeaways & Limitations

    Future digital cancer-navigation research should include broader stakeholders and contexts while evaluating coordination, timeliness, continuity, equity, and implementation beyond usability.

  • Takeaways & Limitations

    The review was limited to English-language publications from 2015 to 2025 and required explicit UCD/HCD terminology, potentially excluding relevant studies.

Abstract

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Navigation programs for patients with cancer improve access and continuity of care, yet their digital transformation is often limited by poor usability and inadequate uptake. Applying user-centered and human-centered design (UCD/HCD) principles may close this gap, but the extent to which such design methods are used and evaluated in oncology navigation tools remains unclear. This scoping review identifies how UCD/HCD principles have been, and should be, applied in developing and implementing digital health tools for navigation for patients with cancer. A scoping review was conducted following PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) and Joanna Briggs Institute guidance. A total of 7 databases (PubMed/MEDLINE, Scopus, IEEE Xplore, Web of Science, Embase, ACM Digital Library, and CINAHL) were searched for English-language articles published between January 2015 and July 2025. Eligible studies reported original, peer-reviewed research on digital or mobile health interventions linked to cancer navigation and documented at least 1 UCD/HCD activity. Two reviewers independently screened records and charted data on context, target users, functions, tool modality, design phase, methods, and outcomes. Findings were synthesized descriptively and thematically. A total of 36 studies met the inclusion criteria. Findings were organized into 4 domains: study characteristics, navigation functions and digital modalities, design processes and methods, and UCD/HCD application. Iterative prototyping and usability testing were the most common, while participatory design and implementation evaluation were underused. UCD/HCD approaches enhance usability and patient relevance of digital cancer navigation tools. However, their application remains limited across cancer types, regions, and functions.

Introduction … Study Selection

This scoping review followed established reporting and methodological guidance to map UCD/HCD use in digital cancer-navigation tools. It used a 7-database search, predefined eligibility criteria, and independent dual-reviewer screening with snowballing and adjudication procedures.

  • Overview: The review followed Joanna Briggs Institute scoping-review methodology and PRISMA-ScR guidance.Ethical approval was not applicable because the study analyzed previously published literature without human participants.
  • Search Strategy: The search mapped UCD/HCD use in digital and mHealth tools supporting navigation for patients with cancer across 7 electronic databases.The search strategy was developed iteratively by the study team without formal librarian consultation.
  • Search Strategy: Database-specific search strategies and execution dates were provided in Multimedia Appendix 2.This documentation complemented the broader search strategy used across the 7 databases.
  • Eligibility Criteria: Eligible studies were published from January 1, 2015, through July 30, 2025, and described at least 1 cancer-navigation-related function and UCD/HCD processes.Navigation functions included care coordination, access facilitation, patient–care-team communication, appointment management, and psychosocial support.
  • Eligibility Criteria: Studies were excluded when they addressed nonnavigation oncology tools, omitted UCD/HCD processes, examined nononcology populations, or were gray literature.Examples of excluded publication types included conference abstracts, dissertations, protocols, and commentaries.
  • Study Selection: Search results were imported into Covidence, deduplicated automatically and manually, and screened through title/abstract review, full-text review, and bidirectional snowballing.Snowballing recursively pursued backward references and studies identified through the retrieved literature.
  • Study Selection: Two reviewers independently assessed titles, abstracts, and full texts, resolving disagreements through discussion with third-reviewer arbitration available if needed.Studies meeting the inclusion criteria advanced from title and abstract screening to full-text review using the same dual-review procedure.

Definitions and Conceptual Framework · Data Extraction · Data Analysis

The review defined digital health, UCD/HCD, design methods, participatory methods, and implementation, then used independent data extraction and iterative qualitative and descriptive quantitative synthesis. Findings were organized into four coherent domains spanning clinical and methodological dimensions.

  • Definitions and Conceptual Framework: Digital health encompassed information and communication technologies supporting care, including web platforms, mobile apps, telehealth, remote monitoring, and decision support.mHealth was defined as the mobile-device-supported subset of digital health technologies.
  • Definitions and Conceptual Framework: UCD/HCD emphasized active end-user and stakeholder involvement across discovery, design, prototyping, evaluation, and implementation phases.The framework aimed to align technologies with users’ needs, values, and contexts.
  • Definitions and Conceptual Framework: Design methods included interviews, focus groups, co-design workshops, and usability testing, could span multiple phases, and were not mutually exclusive.Participatory methods specifically involved users or stakeholders as active contributors rather than solely as evaluation subjects.
  • Definitions and Conceptual Framework: Implementation referred to deploying and integrating digital navigation tools in real-world care settings, including feasibility, workflow integration, training, and sustainability.This definition connected implementation with practical integration into care delivery.
  • Data Extraction: Two reviewers independently extracted bibliographic, methodological, participant, tool, UCD/HCD, navigation-task, and outcome data using a pilot Microsoft Excel charting form.Extracted outcomes included usability measures, patient engagement, navigator workload, and clinical indicators; discrepancies were reconciled by consensus.
  • Data Analysis: Thematic analysis reviewed each included article to identify concepts, use cases, and outcomes related to UCD/HCD in digital cancer navigation.An inductive qualitative synthesis organized emerging patterns into four overarching domains reflecting clinical and methodological dimensions.
  • Data Analysis: Domains were refined iteratively into a coherent, nonoverlapping structure, while descriptive tables and figures summarized frequencies for publication year, geography, cancer type, and digital modality.Study characteristics and thematic findings were presented in supplementary and high-level synthesis tables, and the literature search and screening were depicted in a PRISMA-ScR flow diagram.

Overview

Across 36 included studies, digital oncology navigation tools emphasized usability, education, and communication, while participatory design, broader support functions, and real-world effectiveness evaluation remained limited.

  • Study characteristics: 36 studies met the inclusion criteria; 16 were retained for qualitative synthesis and bidirectional snowballing added 20 articles.Of 192 screened records, 176 were excluded before qualitative synthesis and snowballing.
  • Design processes and methods: Iterative prototyping and usability testing were most common, whereas discovery and implementation phases were rarely addressed.UCD was applied primarily midcycle for usability evaluation.
  • Design processes and methods: Interviews and surveys predominated, with few participatory or co-design workshops and minimal involvement of clinicians, navigators, or caregivers.Patient engagement was more common than broader stakeholder engagement, limiting innovation and sustainability.
  • Functional scope of tools: Web portals and mobile apps primarily supported education and communication, improving patient knowledge and engagement but addressing financial, logistical, and psychosocial barriers less often.Few tools integrated multiple functions or modalities.
  • Evaluation and impact: Usability and satisfaction were the most common metrics, while navigation effectiveness, care coordination, clinical outcomes, equity, timeliness, and continuity were rarely evaluated.The evidence base provided limited real-world support for improved care continuity and suggested a shift toward system-level effectiveness assessment.
  • UCD/HCD application: UCD broadened navigation conceptually beyond information toward communication, coordination, and patient empowerment.Some studies explicitly reframed navigation as multidimensional.

Study Characteristics · Navigation Functions and Digital Modalities

The 36 included studies primarily addressed adult and breast cancers, targeted patients and clinicians, and were concentrated in the United States, Netherlands, and Canada. Caregivers, patient navigators, pediatric populations, and geographically diverse settings received comparatively limited attention.

  • Study Characteristics: 16/36 studies (44.4%) focused on all adult cancers, the largest cancer-context category.Breast cancer was the next most common focus, with 8/36 studies (22.2%).
  • Study Characteristics: 8/36 studies (22.2%) specifically addressed breast cancer.Pediatric and lung populations each appeared in 3/36 studies (8.3%).
  • Study Characteristics: 3/36 studies (8.3%) addressed pediatric populations, while 3/36 (8.3%) addressed lung cancer.Prostate cancer appeared in 2/36 studies (5.6%), and several other cancer contexts appeared in 1/36 studies (2.8%) each.
  • Study Characteristics: 33/36 tools (91.7%) were designed for patients, making patients the most frequently targeted user group.Clinicians or providers were targeted in 25/36 studies (69.4%).
  • Study Characteristics: 6/36 studies (16.7%) considered caregivers, while only 2/36 studies (5.6%) considered patient navigators.These figures indicate comparatively limited attention to caregivers and patient navigators.
  • Study Characteristics: 17/36 studies (47.2%) were conducted in the United States, followed by 7/36 (19.4%) in the Netherlands and 3/36 (8.3%) in Canada.The geographic distribution was concentrated in North American and European settings.
  • Study Characteristics: 2/36 studies (5.6%) were conducted in each of Africa, Germany, and Sweden, while Australia, Iran, Norway, and Taiwan each contributed 1/36 studies (2.8%).The review identified a need for more geographically diverse applications of UCD/HCD approaches to enhance generalizability.

Navigation Purpose · Type of Digital Tools · UCD/HCD Phase and Methods Used

Digital cancer-navigation tools primarily addressed education, system navigation, communication, and care coordination through web platforms and mobile apps. UCD/HCD was used most often for prototyping and testing, while discovery, implementation, and participatory methods were less common.

  • Navigation Purpose: Education and information provision was the most common navigation function, reported in 23/36 studies (63.9%), followed by system navigation, access to care, and patient-to-provider communication.System navigation, access to care, and patient-to-provider communication each appeared in 21/36 studies (58.3%).
  • Navigation Purpose: Care coordination was reported in 20/36 studies (55.6%), whereas emotional or psychosocial support and appointment scheduling or tracking appeared less often.Emotional or psychosocial support was reported in 11/36 studies (30.6%), and appointment scheduling and tracking in 7/36 studies (19.4%).
  • Type of Digital Tools: Web platforms were the most common digital tool type, reported in 18 studies (50%), closely followed by mobile apps in 17/36 studies (47.2%).Conceptual designs without a tested tool appeared in 3/36 studies (8.3%), while software prototypes and telehealth or video tools each appeared in 1/36 studies (2.8%).
  • UCD/HCD Phase and Methods Used: UCD/HCD activities were applied across discovery, design and prototyping, testing, and implementation, but timing and depth varied considerably across studies.Most studies applied UCD/HCD selectively at one or more design phases rather than following a linear or standardized sequence.
  • UCD/HCD Phase and Methods Used: Discovery activities were reported in fewer than half of studies, at 17/36 (47.2%), and implementation was least represented, at 7/36 (19.4%).Implementation activities addressed deployment, workflow integration, training needs, and resource constraints, but remained uncommon.
  • UCD/HCD Phase and Methods Used: Testing was reported in 63.8% (23/36) of studies, while design and prototyping appeared in 19/36 studies (52.7%).Testing commonly evaluated and refined tools after development, whereas design and prototyping often iteratively incorporated user feedback into functional systems.
  • UCD/HCD Phase and Methods Used: Interviews were the most frequently used design method, reported in 25/36 studies (69.4%), followed by usability testing in 16/36 studies (44.4%).Overall, 80% (29/36) of studies used more than one method across the design process.
  • UCD/HCD Phase and Methods Used: Researcher-led methods predominated, while co-design workshops, journey mapping, and multistakeholder sessions were reported by only a small number of studies.The review characterized this pattern as consultative rather than deeply participatory, despite some studies integrating stakeholder perspectives more systematically.

Conceptualizations of Cancer Navigation Through UCD/HCD · Overview

UCD/HCD approaches in cancer navigation were primarily used as practical strategies to make patient-facing tools usable and acceptable. Their application less often extended to broader stakeholder participation, system-level outcomes, or real-world implementation.

  • Overview: UCD/HCD approaches were most often applied as practical design strategies rather than overarching frameworks for cancer navigation.
  • Overview: Three main functions dominated: evaluating usability and satisfaction, centering patient perspectives, and iteratively refining tools through prototyping and testing.
  • Conceptualizations of Cancer Navigation Through UCD/HCD: Usability and satisfaction outcomes were used as markers of navigation success.
  • Overview: Usability testing identified concerns about patient burden, tool fatigue, timing of introduction, relevance, and privacy.These concerns underscored the importance of using a UCD process.
  • Conceptualizations of Cancer Navigation Through UCD/HCD: Fewer studies broadened participation to caregivers, clinicians, or navigators.
  • Conceptualizations of Cancer Navigation Through UCD/HCD: Some design methods reconceptualized navigation as information exchange, communication, and coordination.
  • Overview: UCD/HCD approaches were less frequently applied to system-level outcomes or implementation in real-world settings.

Outcomes as Navigation Constructs · Levels of Stakeholder Engagement in UCD/HCD

Studies primarily evaluated usability and user satisfaction, while broader navigation, clinical, and implementation outcomes were less frequently assessed. UCD/HCD processes generally centered patients, with fewer studies engaging clinicians, caregivers, navigators, and other stakeholders to address system-level needs.

  • Outcomes as Navigation Constructs: Usability was assessed in 28/36 studies (77.8%), and user satisfaction in 26/36 (72.2%), most often as proxies for tool success.Navigation effectiveness appeared in 17/36 studies (47.2%), while patient engagement appeared in 13/36 (36.1%).
  • Outcomes as Navigation Constructs: Broader outcomes were less common: clinical use in 9/36 studies (25%), design or strategy insights in 8/36 (22.2%), and health professional engagement in 6/36 (16.7%).One platform evaluation reported improved access, remote symptom management, and more efficient patient prioritization.
  • Outcomes as Navigation Constructs: The outcome pattern emphasized acceptability and ease of use over long-term effectiveness, coordination, sustainability, and system-level impact.Only limited studies assessed implementation-related outcomes such as timeliness, collaboration, or equitable access.
  • Outcomes as Navigation Constructs: Further evaluation was identified as necessary to establish effectiveness and sustainability for tools supporting symptom assessment, care coordination, and pain control in remote, resource-limited settings.The mPCL application connected patients, caregivers, local health workers, and palliative care specialists.
  • Levels of Stakeholder Engagement in UCD/HCD: Most studies engaged patients as the primary design voice, commonly using semistructured interviews and surveys to support empathy and coproduction.Patient participation improved perceived usefulness and revealed symptom-reporting issues that might otherwise have gone unnoticed.
  • Levels of Stakeholder Engagement in UCD/HCD: A smaller subset included health care providers, clinicians, caregivers, and navigators, extending UCD/HCD beyond individual patients to multiactor cancer-care systems.Examples included nurse navigators, interfacility teams, local health workers, caregivers, and community stakeholders.
  • Levels of Stakeholder Engagement in UCD/HCD: Caregiver participation identified 4 caregiving coordination technology archetypes at diagnosis and showed that preferences evolved over time.The finding came from interviews with 20 caregivers of children with cancer.
  • Levels of Stakeholder Engagement in UCD/HCD: Diverse stakeholder inclusion remained less common than patient-only approaches, although multistakeholder studies identified workflow alignment, caregiver responsibilities, and infrastructure limitations.Most studies therefore retained a primary focus on patient perspectives rather than the broader system-level context of cancer navigation.

Iteration and Responsiveness · Redefining Navigation Through Design

Digital cancer-navigation tools were commonly developed through iterative user feedback, while UCD/HCD also broadened navigation beyond scheduling and wayfinding to encompass information exchange, communication, coordination, and barrier reduction.

  • Iteration and Responsiveness: UCD/HCD was frequently operationalized as an iterative cycle of prototype testing and refinement responding to user feedback.This responsiveness grounded navigation tools in users’ real-world needs and experiences.
  • Iteration and Responsiveness: Usability testing of StressProffen and CMyLife identified data-entry and workflow-guidance challenges that informed interface and content revisions.The revisions aimed to improve navigation pathways.
  • Iteration and Responsiveness: Iterative development of MijnAVL improved usability by adding frequently asked questions and hyperlinks.These additions were intended to improve patient experience.
  • Redefining Navigation Through Design: Several studies reconceptualized cancer navigation as information exchange, communication, and care coordination rather than only scheduling or wayfinding.UCD/HCD approaches were used to define navigation as a broader process in cancer care.
  • Redefining Navigation Through Design: Basch et al used patient-reported outcomes to strengthen patient-clinician communication, making symptom monitoring a mechanism for timely intervention and treatment adjustment.This positioned symptom monitoring within cancer navigation.
  • Redefining Navigation Through Design: Donawa et al co-designed a mobile distress-management tool for rural communities that integrated emotional, informational, and logistical support.The tool positioned navigation as an integrated system addressing multiple barriers simultaneously.

Discussion

UCD/HCD has improved the usability and patient responsiveness of digital cancer-navigation tools, but its application remains concentrated in adult cancers, high-income settings, patient-facing functions, and midcycle design activities. Future work should broaden stakeholder participation, navigation functions, and evaluation toward implementation, coordination, timeliness, continuity, equity, and system-level outcomes.

  • Design processes: UCD/HCD was most often applied iteratively to patient-facing tools during prototyping and usability evaluation, with less attention to discovery and routine-care implementation.This pattern may limit innovation, sustainability, and real-world integration.
  • Scope and equity: Application was concentrated in adult cancers and high-income settings, while pediatric, rare-cancer, and low- and middle-income contexts were underrepresented.These gaps may constrain the generalizability and equity relevance of digital navigation research.
  • Stakeholder engagement: Patient input was common, but caregivers, navigators, and clinicians were rarely included, leaving workflow and coordination barriers underexplored.Broader stakeholder engagement could support tools that move beyond stand-alone patient applications toward integrated continuity-of-care systems.
  • Navigation functions: Digital navigation tools focused heavily on education and information, with limited attention to psychosocial, financial, and logistical barriers.Expanding beyond informational features may require more complex functions with potential system-level impact.
  • Evaluation priorities: Evaluation outcomes were dominated by usability and satisfaction, whereas navigation effectiveness, care coordination, clinical use, equity, timeliness, and continuity were assessed far less often.Evaluation frameworks should judge whether tools improve access, coordination, sustainability, and system performance—not only whether users like the interface.

Multimedia Appendix 1

Multimedia Appendix 1 contains the PRISMA-ScR checklist accompanying the scoping review.

  • The appendix provides the PRISMA-ScR checklist as a DOCX file (84 KB).

Multimedia Appendix 2

Multimedia Appendix 2 provides a summary of included studies and the full search strategies in a DOCX file.

  • The appendix contains a summary of included studies.
  • It also contains the full search strategies.
  • The appendix is provided as a 582 KB DOCX file.

Abbreviations

The abbreviations define key design, mobile-health, and scoping-review terminology used in the paper.

  • HCD means human-centered design, UCD means user-centered design, mHealth means mobile health, and PRISMA-ScR denotes the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews.
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