TY - JOUR T1 - User-Centered Design Groups to Engage Patients and Caregivers with a Personalized Health Information Technology Tool JF - Biology of Blood and Marrow Transplantation Y1 - 2016 A1 - Maher, Molly A1 - Kaziunas, Elizabeth A1 - Ackerman, Mark A1 - Derry, Holly A1 - Forringer, Rachel A1 - Miller, Kristen A1 - O'Reilly, Dennis A1 - An, Larry C A1 - Tewari, Muneesh A1 - Hanauer, David A A1 - Choi, Sung Won KW - bone marrow transplant KW - caregivers KW - design group KW - engagement KW - health IT KW - patient activation KW - pediatric; hematopoietic cell transplantation KW - user-centered design AB -

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.govNCT02409121).

VL - 22 UR - Complete-OnlyDOI ER - TY - JOUR T1 - Identifying unmet informational needs in the inpatient setting to increase patient and caregiver engagement in the context of pediatric hematopoietic stem cell transplantation JF - Journal of the American Medical Informatics Association Y1 - 2015 A1 - Kaziunas, Elizabeth A1 - Hanauer, David A A1 - Ackerman, Mark S A1 - Choi, Sung Won KW - bone marrow transplantation KW - electronic health records KW - inpatients KW - patient participation KW - patient-centered care AB -

Background Patient-centered care has been shown to improve patient outcomes, satisfaction, and engagement. However, there is a paucity of research on patient-centered care in the inpatient setting, including an understanding of unmet informational needs that may be limiting patient engagement. Pediatric hematopoietic stem cell transplantation (HSCT) represents an ideal patient population for elucidating unmet informational needs, due to the procedure’s complexity and its requirement for caregiver involvement.

Methods We conducted field observations and semi-structured interviews of pediatric HSCT caregivers and patients to identify informational challenges in the inpatient hospital setting. Data were analyzed using a thematic grounded theory approach.

Results Three stages of the caregiving experience that could potentially be supported by a health information technology system, with the goal of enhancing patient/caregiver engagement, were identified: (1) navigating the health system and learning to communicate effectively with the healthcare team, (2) managing daily challenges of caregiving, and (3) transitioning from inpatient care to long-term outpatient management.

Discussion We provide four practical recommendations to meet the informational needs of pediatric HSCT patients and caregivers: (1) provide patients/caregivers with real-time access to electronic health record data, (2) provide information about the clinical trials in which the patient is enrolled, (3) provide information about the patient’s care team, and (4) properly prepare patients and caregivers for hospital discharge.

Conclusion Pediatric HSCT caregivers and patients have multiple informational needs that could be met with a health information technology system that integrates data from several sources, including electronic health records. Meeting these needs could reduce patients’ and caregivers’ anxiety surrounding the care process; reduce information asymmetry between caregivers/patients and providers; empower patients/caregivers to participate in the care process; and, ultimately, increase patient/caregiver engagement in the care process.

VL - 23 UR - Complete-OnlyDOI IS - 1 ER -