User-Centered Design Groups to Engage Patients and Caregivers with a Personalized Health Information Technology 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. In the current study, we examined the views, needs, and wants of patients and caregivers in the design and development process of the BMT Roadmap through two user-centered Design Groups, conducted in March 2015 and April 2015, respectively: Design Group I utilized a low-fidelity paper-based prototype and Design Group II utilized a high-fidelity prototype presented to users as a web-app on Apple® iPads. There were 11 caregivers (median age 44, range 34–69 years) and 8 patients (median age 18 years, range 11–24 years) in the study population. The qualitative analyses revealed a wide range of responses helpful in guiding the iterative development of the system. Three important themes emerged from the Design Groups: 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). From the patient and caregiver perspectives, the BMT Roadmap system was considered useful. The findings from the Design Groups resulted in changes that led to an improved, functional BMT Roadmap product. This unique research process and the findings reported herein included data generated from patients, caregivers, providers, and researchers as partners. Collectively, the data informed the design and development of the tool, which will be tested as an intervention in the pediatric HCT population at our center in the fall of 2015 (ClinicalTrials.gov NCT02409121).

Development of a Web Portal for Physical Activity and Symptom Tracking in Oncology Patients: Protocol for a Prospective Cohort Study (Preprint)

“…The inclusion of qualitative interviews strengthens the study and will help to guide future development of the system and studies. User designed health systems have been shown to increase functionality, specificity and uptake [27].…”

Design considerations for family-centered health management

“…Patients and caregivers can take charge of health information, including tracking symptoms or scheduling medical appointments with health technology [9]. Over the last several years, researchers have begun to study the needs of supporting families of patients with chronic illness [2,6]. Although studies have demonstrated improved outcomes when families have a shared sense of responsibility [1,7], there remains paucity of data supporting interventions for pediatric patients and family caregivers in the outpatient setting.…”

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

“…A paper prototype of a health information technology (HIT) tool, called "BMT Roadmap," was developed to meet these needs. We then took the important step in gaining end-user feedback of our paper-based prototype, getting feedback from patients and caregivers in the design of our HIT using both low-fidelity and high-fidelity prototypes (phase 2) [6].…”

“…These studies eventually led to the development of BMT Roadmap, a HIT tool delivered on a consumer-friendly tablet computer (Apple iPad, Cupertino, CA) that integrates patientspecific health information [7]. BMT Roadmap includes the following domains: (1) real-time laboratory results that families can view even before the clinical team; (2) medications, with plain language summaries of common toxicities, indications for use, and instructions for administration; (3) clinical trials in which the patient was enrolled accompanied by a 1-page plain language study summary; (4) healthcare provider directory with "yearbook-style" photos; (5) visual depiction of the trajectory of HCT or "Phases of Care" as patients progress through the inpatient hospitalization; and (6) interactive discharge checklist that incorporates educational videos to prepare families for discharge (eg, centralline care). Herein, we report the implementation of phase 3 of our research, a qualitative study based on semistructured interviews conducted in caregivers who used BMT Roadmap throughout the patients' hospitalization.…”