Clinical Research: Supportive Care
User-Centered Design Groups to Engage Patients and Caregivers with a Personalized Health Information Technology Tool

https://doi.org/10.1016/j.bbmt.2015.08.032Get rights and content
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Highlights

  • HCT patients and caregivers experience numerous information needs and challenges.

  • Health IT has the potential to improve coordination of care and communication.

  • User-centered design groups were feasible to conduct in HCT patient and caregivers.

  • Design groups resulted in changes that led to an improved health IT tool.

Abstract

Health information technology (IT) has opened exciting avenues for capturing, delivering and sharing data, and offers the potential to develop cost-effective, patient-focused applications. In recent years, there has been a proliferation of health IT applications such as outpatient portals. Rigorous evaluation is fundamental to ensure effectiveness and sustainability, as resistance to more widespread adoption of outpatient portals may be due to lack of user friendliness. Health IT applications that integrate with the existing electronic health record and present information in a condensed, user-friendly format could improve coordination of care and communication. Importantly, these applications should be developed systematically with appropriate methodological design and testing to ensure usefulness, adoption, and sustainability. Based on our prior work that identified numerous information needs and challenges of HCT, we developed an experimental prototype of a health IT tool, the BMT Roadmap. Our goal was to develop a tool that could be used in the real-world, daily practice of HCT patients and caregivers (users) in the inpatient setting. Herein, we examined the views, needs, and wants of users in the design and development process of the BMT Roadmap through user-centered Design Groups. Three important themes emerged: 1) perception of core features as beneficial (views), 2) alerting the design team to potential issues with the user interface (needs); and 3) providing a deeper understanding of the user experience in terms of wider psychosocial requirements (wants). These findings resulted in changes that led to an improved, functional BMT Roadmap product, which will be tested as an intervention in the pediatric HCT population in the fall of 2015 (ClinicalTrials.gov NCT02409121).

Key Words

Health IT
Caregiver
Design group
Engagement
User-centered design
Pediatric
Hematopoietic cell transplantation

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Financial disclosure: See Acknowledgments on page 357.

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These authors contributed equally to this work.