BMT Roadmap: A User-Centered Design Health Information Technology Tool to Promote Patient-Centered Care in Pediatric Hematopoietic Cell Transplantation

Abstract

A B S T R A C THealth information technology (HIT) has great potential for increasing patient engagement. Pediatric hematopoietic cell transplantation (HCT) is a setting ripe for using HIT but in which little research exists. "BMT Roadmap" is a web-based application that integrates patient-specific information and includes several domains: laboratory results, medications, clinical trial details, photos of the healthcare team, trajectory of transplant process, and discharge checklist. BMT Roadmap was provided to 10 caregivers of patients undergoing firsttime HCT. Research assistants performed weekly qualitative interviews throughout the patient's hospitalization and at discharge and day 100 to assess the impact of BMT Roadmap. Rigorous thematic analysis revealed 5 recurrent themes: emotional impact of the HCT process itself; critical importance of communication among patients, caregivers, and healthcare providers; ways in which BMT Roadmap was helpful during inpatient setting; suggestions for improving BMT Roadmap; and other strategies for organization and management of complex healthcare needs that could be incorporated into BMT Roadmap. Caregivers found the tool useful and easy to use, leading them to want even greater access to information. BMT Roadmap was feasible, with no disruption to inpatient care. Although this initial study is limited by the small sample size and singleinstitution experience, these initial findings are encouraging and support further investigation.

Technology Access, Technical Assistance, and Disparities in Inpatient Portal Use

“…12,13 The increasing popularity of portals and their potential utility to hospitalized patients has motivated some organizations to adopt inpatient portals, or patient portals accessed in the hospital setting. [14][15][16][17][18][19] Vendors now offer portals intended specifically for in-hospital use, such as MyChart Bedside from Epic Systems Corporation. 20 Institutions use inpatient portals to address patients' information needs, engage patients in decision making, facilitate patient-provider communication, improve transparency, provide health education, increase patient safety, and enable transitions of care.…”

Impact of a health information technology tool addressing information needs of caregivers of adult and pediatric hematopoietic stem cell transplantation patients

“…Further, in our study, BMT Roadmap was available only inpatient, not in the outpatient setting to help navigate the newunknown outpatient caregiving role. Our previous qualitative work indicates that caregivers desire caregiver-specific modules in the outpatient setting, too [12]. Thus, future design should focus on developing these new modules, which is possible with a flexible HIT system.…”

“…Key stakeholders (patients, caregivers, and healthcare providers) participated in the design and development of BMT Roadmap [10,11]. We have previously reported on the initial feasibility of BMT Roadmap for patients in the inpatient setting [12]. Herein, we report the findings of a preliminary feasibility study among caregivers of HSCT patients using BMT Roadmap, assessing activation, mental health person reported outcome measures (PROMs), and quality-of-life.…”

Promoting Health and Well-Being Through Mobile Health Technology (Roadmap 2.0) in Family Caregivers and Patients Undergoing Hematopoietic Stem Cell Transplantation: Protocol for the Development of a Mobile Randomized Controlled Trial

“…Details of the app with descriptions of each of the components have been published previously [ 24 - 26 ]. We iteratively designed and developed the Roadmap 2.0 mHealth app following the following 7 research phases: (1) Roadmap 1.0 prototype [ 27 , 28 ]; (2) design groups to evaluate the Roadmap 1.0 prototype [ 29 ]; (3) pilot study of Roadmap 1.0 [ 30 - 32 ]; (4) extensive literature review [ 33 , 34 ]; (5) design and development of Roadmap 2.0 in the outpatient setting [ 25 ]; (6) design and development of Roadmap 2.0 in the participant home setting [ 24 ]; and (7) deployment of a National Caregiver Health survey [ 25 ]. Figure 1 shows screenshots of key app features, and Multimedia Appendix 1 provides a detailed definition of the multicomponent features of the Roadmap 2.0 app.…”