Patient-reported outcome measures (PROMs) are gaining significant momentum in clinical practice and research to foster a patient-centered approach to health care delivery [1-4]. PROMs are questionnaires used to collect subjective information directly from the patient regarding their health-related quality of life (HRQoL), functional status, and symptoms [5,6]. By directing the foci of clinical encounters, PROMs can facilitate early detection and monitoring of patient symptoms, empower patients to actively participate in their care, enhance health care providers’ (HCPs) understanding of patient needs, and influence joint discussions with patients about health outcome priorities [3,4]. In documenting patient-reported progress, PROMs can guide treatment decisions, positively influence patient outcomes [7], and encourage measurement-based care practices [8].

Despite the proposed value of PROMs, low PROM adoption rates have been attributed to factors related to the completion of paper-based PROMs, including limited time and resources among clinicians and low response rates from patients [4]. Digital electronic PROMs (ePROMS) have been designed to overcome cited barriers and to improve PROM data quality and completion time [1,9]. Many benefits have been documented such as greater patient preference and acceptability, higher data quality and response rates, and reduced health care costs [1]. Currently, platforms used for ePROM collection (eg, REDCap [Research Electronic Data Capture]) primarily target the clinical care of adults [9-11], with few designed specifically for the clinical management of children’s physical, social, and emotional health [4,10,12-14]. The lack of child-friendly and age-appropriate ePROM platforms needs addressing as children as young as 5 have shown capacity to self-report on their HRQoL [15], and 8 years of age is the recommended age to administer self-reported measures to children [10]. In the context of limited pediatric ePROM platforms, and with considerations around regulatory data privacy and management guidelines, secure servers for data storage and timely, responsive administrative and technical support [16,17], the development of new evidence-based platforms that enhance eHealth solutions for pediatric care should be prioritized.

User-centered design (UCD) is a popular design approach for developing eHealth innovations, including ePROM platforms [18]. When applying a UCD approach to optimize usability, compliance, and adoption of ePROM platforms, end users (ie, patients and HCPs) and key stakeholders (eg, decision- and policy-makers) are involved in the platform design processes [9,19,20]. Specifically, UCD outlines that (1) designers should understand end users and user-specific tasks, and (2) design processes are iterative to involve multiple cycles of design, testing, and redesign [21]. With attention to these parameters, using a UCD approach to eHealth platform development can create technologies that are meaningful, manageable, and sustainable for their user and organizational health care systems, potentially impacting the implementation success of eHealth solutions [22,23].

Voxe is a pediatric, user-centered, and custom-built ePROM platform that is a progressive web application designed to integrate PROMs into the delivery of clinical care for pediatric patients with chronic health conditions [24]. Despite the profound and multidimensional impact of chronic disease on children’s HRQoL, objective outcome metrics (eg, morbidity and mortality) alone are frequently used to determine the success of clinical interventions and care [25,26]. Given the paucity of child-oriented ePROM platforms in health care [27,28], Voxe represents a novel and child-friendly ePROM platform to facilitate the systematic integration of children’s subjective evaluations regarding their physical, social, and emotional well-being in the delivery of care [24]. The advantages to having a custom-built progressive web application are (1) the ability to tailor the user experience specifically for pediatric patients, (2) to seamlessly integrate Voxe into the clinical workflow to reduce the barrier to ePROM completion, and (3) to ensure that Voxe is compatible with various electronic devices (eg, mobile phones, tablets, and computers). Additional distinguishing features include Voxe’s capacity to incorporate any PROM, its capability to be created in different languages and its potential to integrate with any electronic medical record (EMR). Notably, for the purpose of Phase 5, Voxe was integrated with the EMR Epic.

Building on previously completed phases of Voxe’s development (Figure 1) [25,29], this paper outlines Voxe’s user-centered design approach (Phase 4) involving feedback from end users at 2 pediatric hospitals in Canada and subsequent usability testing (Phase 5) specific to Voxe’s platform features. The discussion will highlight our user-centered approach as a strength in prioritizing end user needs prior to Voxe’s implementation within a pediatric health care setting.

Purposive sampling was used to recruit patients followed by The Hospital for Sick Children (SickKids) Transplant and Regenerative Medicine Centre (TRMC) or Hematology and Oncology program at the Children’s Hospital of Eastern Ontario (CHEO) across age, diagnosis, sex, gender, and ethnicity. Members of the patients’ interdisciplinary health care teams at SickKids and CHEO were also purposively recruited across professional disciplines, years of practice, sex, gender, and ethnicity.

Patients were eligible if they met the following criteria: (1) heart, kidney, liver, or lung transplant recipients who were a minimum of 3 months posttransplant (SickKids) or followed by the Hematology and Oncology program (CHEO); (2) between 8 and 17 years of age; and (3) able to speak and read in English. Patients with significant cognitive impairments, as determined by a health care team member, were not eligible to participate. Eligible HCPs included any member of the interdisciplinary teams within the Hematology and Oncology program (CHEO; Phase 4) or the TRMC (SickKids; Phases 4 and 5).

Ethical approval to conduct this study was obtained from the Institutional Research Ethics Board at SickKids (1000057043 for Phase 4 and 1000067700 for Phase 5). All participants provided informed consent prior to their involvement in this study, and interview transcripts were deidentified. All participants received a $20 retail store gift card upon completion of study participation.

This paper provides an overview of a UCD approach and usability testing phases of a novel evidence-based pediatric ePROM platform prototype named Voxe. Patients particularly appreciated Voxe’s child-friendly options for personalized profiles (eg, color and avatar selection) and the inclusion of Voxe ambassador GIFs (ie, animated avatars) in the platform. HCPs’ SUS scores reflected high satisfaction rates with the Voxe platform prototype. Design testing sessions with HCPs also highlighted Voxe’s ease of use and unique capacity for integration into the hospital EMR as valuable for streamlining clinical documentation and evaluation processes. Patients’ and HCPs’ high satisfaction with the Voxe prototype highlight the importance of being responsive to user suggestions from the inception of eHealth platform developments to ensure their efficient and effective design [20,59].

Patients’ feedback on the Voxe prototype highlights the need to integrate developmentally responsive design considerations (eg, choice of color and avatars) in pediatric ePROM platforms to foster children’s sense of engagement and motivation to complete ePROMs. While children and adolescents may be particularly amenable to using eHealth platforms due to their familiarity with technologies such as the internet and mobile phones, eHealth solutions should still respond to children’s rapidly shifting development and associated ideas about the novelty or innovative nature of technology [60]. Insufficient consideration of the needs of the intended users in the development of eHealth platforms risks eHealth tools that are not able to fully accomplish their objectives [61], particularly if technologies do not align with end users' daily lives, habits, or rituals [22]. Patients’ insights on Voxe’s child-friendly characteristics contribute to a limited body of research regarding how to tailor ePROM platforms to the preferences of pediatric patients to optimize ePROM adoption and implementation [14,62,63].

The UCD approach that guided Voxe’s development responds to existing calls for user-centered approaches to pediatric eHealth solution developments [64,65]. UCD is recognized as an optimal design approach for creating eHealth platforms [18,66,67] to help overcome eHealth implementation barriers, such as minimal clinical use of eHealth tools and low adoption rates in health care practices [68]. As eHealth technologies are often developed with a marginal level of engagement from end -users [68], Voxe’s development phases offer practical steps for facilitating the inclusion of end users’ perspectives in creating eHealth platform solutions specific to pediatric health care.

One challenge in pediatric health care practice is that most oral and written communications “with” children occur between adults [69-71]. Voxe’s usability testing sessions highlighted Voxe’s capacity for motivating pediatric patients to complete ePROMs and the potential to engage them in discussions concerning their care and treatment. For example, Voxe’s development directly responded to what children considered most meaningful to them (eg, the incorporation of account personalization and Voxe ambassador GIFs), which may differ from adult-informed ideas about children’s needs and preferences. Voxe also offers children time to reflect on pertinent issues they wish to emphasize in upcoming clinic appointments, and HCPs can review and consider patients’ responses before clinical visits. Participants highlighted that Voxe’s reminder notification system and presentation screen, which display the patient’s summarized ePROM results, could be useful tools to facilitate child-provider communication regarding PRO data. The design and functionalities of the Voxe prototype responded to patient needs within the context of clinic visits, encouraging in-advance completion and purposively directing the foci of clinical encounters to patient priorities, offering the potential to improve satisfaction with health care [72-74].

The integration of ePROM data into EMRs presented another contextual variable driving ePROM platform development to address end user needs. Recent estimates suggest that most ePROM platforms are designed as stand-alone platforms, and only 60% (6/10) of ePROM systems offer compatibility for linking with EMRs [75]. In the context of limited pediatric ePROMs, Voxe is one of only a few pediatric-focused [4,76] or combined (ie, children and adults) [10] ePROM platforms to offer the capacity for front-end integration with EMRs. Similar to other cited benefits of ePROM platforms [6,72,74], Voxe can facilitate the integration of PRO data in patient EMRs in a manner that mirrors clinicians’ existing workflows relative to documentation and assessment practices. During Voxe’s usability evaluations, HCPs emphasized the value of Voxe’s capacity for seamless integration into the EMR, which facilitated viewing and sharing mock PRO data in real time, and has the potential to offer time-saving benefits and remove potential burdens associated with logging into a stand-alone platform to review PRO data [74]. Overall, HCPs described how Voxe could help address key barriers pertaining to ePROM uptake in pediatric clinical practices, such as inconsistencies in compatibilities with EMRs, which has been cited among other associated challenges with PRO data management [6].

The UCD approach and usability testing of Voxe outlined in this paper will inform the full operationalization and implementation of Voxe in pediatric health care settings. Future implementation initiatives will include (1) the delivery of HCP orientation sessions to familiarize HCPs with Voxe and (2) the evaluation (Phase 6) of the Voxe ePROM platform using a hybrid implementation-effectiveness design. Presently, the implementation of ePROMs in health care settings remains sparse and inconsistent [6], and transparent reporting on the use of implementation strategies to guide the future implementation of Voxe [77,78] will contribute to addressing this knowledge gap.

Voxe was designed and evaluated by an interdisciplinary research team with expertise in pediatric health research, including UCD and mixed methodology. This approach elicited participant perspectives through qualitative methods, garnering insights from a diverse sample of end user participants (ie, patients and HCPs) relative to age and clinician type. Participants completed simple tasks aligned with using Voxe which provided feedback about the changes needed prior to implementation. Evaluating the use of Voxe in more complex, “real-world” situations and to interpret patient ePROM results and trends longitudinally is a future aim of our program of research. We acknowledge that participants represented a small sample recruited from the SickKids TRMC and the Hematology and Oncology program at CHEO which limited eligible chronic health conditions and may have implications on the generalizability of our findings. Future studies should include participation from other pediatric hospitals and clinical programs. Of note, the sample recruited included English-speaking participants only. The absence of the perspectives of non-English speaking individuals to inform the development of Voxe limits our transferability of findings within these populations.

This paper outlines Voxe’s UCD approach and the usability testing of Voxe’s platform features as an ePROM platform designed for implementation into clinical care delivery for pediatric patients with chronic health conditions. As a patient-facing platform that can be integrated into EMRs, Voxe aligns with measurement-based care practices to foster quality patient-centered approaches to care. End users’ positive feedback and evaluation of the platform’s user-friendliness and efficiency suggest that Voxe represents a valuable and promising solution to systematically integrate PRO data in complex and dynamic clinical health care settings. Future collection of usage and outcome data will enable cost-benefit analyses to support the long-term integration of eHealth platforms in clinical services [79].