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Creation of an electronic patient-reported outcome measure platform Voxe: a mixed methods study protocol in
Samantha J Anthony1,2,3, Sarah J Pol4, Jia Lin4
1Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada samantha.anthony@sickkids.ca.
Insights
This study developed Voxe, a user-centered electronic platform for patient-reported outcome measures (PROMs) to improve care for pediatric transplant patients. Voxe engages patients and providers in design and testing for better health outcomes.
Area of Science:
- Pediatric Health
- Health Informatics
- Patient Engagement
Background:
- Patient-reported outcome measures (PROMs) are crucial for engaging patients and informing shared decision-making in clinical settings.
- Implementing PROMs in pediatric solid organ transplant care can significantly improve patient outcomes.
- Existing PROM platforms may not adequately address the specific needs of pediatric populations.
Purpose of the Study:
- To create Voxe, a user-centered electronic platform for collecting PROMs in pediatric solid organ transplant recipients.
- To enhance patient engagement and shared decision-making through the implementation of a novel PROM platform.
- To improve health outcomes for pediatric solid organ transplant patients by integrating PROMs into routine clinical care.
Main Methods:
- A user-centered design approach was employed, involving iterative testing with pediatric transplant recipients (ages 8-17) and healthcare providers.
- Two phases included user interface design with task-based activities and usability testing using the think-aloud technique.
- Data collection involved questionnaires, semi-structured interviews, and task performance metrics (e.g., efficiency, satisfaction, error rates).
Main Results:
- Iterative design and testing phases engaged patients and providers to refine the Voxe platform's usability and functionality.
- The study successfully generated a user-centered electronic PROM platform tailored for pediatric transplant recipients.
- Methodological and operational insights were gained to inform future implementation strategies.
Conclusions:
- Voxe represents a significant advancement in utilizing electronic PROMs for pediatric solid organ transplant care.
- The user-centered design ensures the platform meets the needs of young patients and healthcare providers.
- Successful implementation of Voxe has the potential to improve patient engagement and health outcomes in this vulnerable population.
Introduction:
Patient-reported outcome measures (PROMs) provide an opportunity for meaningful patient engagement and shared decision-making. The objective of this research programme is to improve health outcomes for paediatric solid organ transplant patients by implementing PROMs into clinical care. The current study aims to create Voxe, a paediatric user-centred electronic PROM platform, by engaging patients and healthcare providers throughout the design and development process.
Methods And Analysis:
The creation of Voxe will occur over two phases that build on previous research. The user interface design phase employs a 'user-centric' approach to identify end-users' needs and iteratively refine the look and layout of Voxe to meet these needs. Transplant recipients, aged 10-17, and healthcare providers will participate in three rounds of testing (24 participants total). Participants will: (1) complete task-based activities (outcomes-effectiveness and efficiency), (2) complete questionnaires (outcome-satisfaction) and (3) participate in a semi-structured interview. The following phase involves software development and Voxe usability testing. Transplant recipients, aged 8-17, and healthcare providers will participate in four rounds of iterative testing (24-40 participants total). The think-aloud technique will be employed, and participants will describe their thoughts and feelings while interacting with a Voxe prototype. Participants will: (1) log into Voxe and complete tasks (outcomes-time on task, successful task completion, frequency of critical and non-critical errors and error-free rate), (2) complete questionnaires (outcome-satisfaction) and (3) participate in a semi-structured interview. Findings will result in the creation and launch of a user-centred electronic PROM platform.
Ethics And Dissemination:
Research ethics board approval has been provided by The Hospital for Sick Children. This research is critical to answering methodological and operational questions to inform Voxe implementation in paediatric clinical settings and facilitate PROM data collection. Future investigations will include an implementation-effectiveness evaluation.
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