Doctor of Philosophy

dissertationInadequate care coordination has been identified as a significant problem in patient care, resulting in diminished satisfaction, increased cost, and reduced quality of care. Comprising an estimated 15.6% (approximately 11 million) of the pediatric population, children and youth with special health care needs (CYSHCN) are "those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally". Caring for CYSHCN is often highly complex, time-, effort-, and resource-intensive, due to complex healthcare conditions, comorbidities, and age of patients. Current electronic health record (EHR) and personal health record (PHR) systems do not adequately support the needs of care coordination. The reasons for this include lack of appropriate tools to support complex care coordination tasks, poor usability, and gaps in information essential for providing team-based patient care. The issues are further amplified while coordinating care for CYSHCN because their health records tend to be voluminous, involve a large care team, and are distributed over multiple systems typically with little to no interoperability. To develop tools that promote effective and efficient care coordination, designers must first understand what information is needed, who needs it, when they need it, and how it can be made available. Our first study focused on identifying and describing information needs and associated goals related to coordinating care for CYSHCN. We found that a critical information goal for care coordination is care networking, which includes building a patient's care team; knowing team member identities, roles, and contact information; and sharing pertinent information with the team to coordinate care. In our second study, we designed and developed two versions of a patient-, family-, and clinician-facing tool to support care networking. We then conducted a formative evaluation and compared the usability, usefulness, and efficiency of the two versions. To enable such tools to help with management of information critical to care coordination, information for care networking needs to be obtained from all information sources involved in the patient's care. In our third study, we identified and assessed prevalent and emerging national data standards to support electronic exchange and extraction of patient care team related data. The findings and innovations from this research are envisioned to help guide the design and development of next generation clinician- and patient-/family-facing applications to support care coordination of complex pediatric patients

The Development of an Infrastructure to Facilitate the Use of Whole Genome Sequencing for Population Health

The clinical use of genomic analysis has expanded rapidly resulting in an increased availability and utility of genomic information in clinical care. We have developed an infrastructure utilizing informatics tools and clinical processes to facilitate the use of whole genome sequencing data for population health management across the healthcare system. Our resulting framework scaled well to multiple clinical domains in both pediatric and adult care, although there were domain specific challenges that arose. Our infrastructure was complementary to existing clinical processes and well-received by care providers and patients. Informatics solutions were critical to the successful deployment and scaling of this program. Implementation of genomics at the scale of population health utilizes complicated technologies and processes that for many health systems are not supported by current information systems or in existing clinical workflows. To scale such a system requires a substantial clinical framework backed by informatics tools to facilitate the flow and management of data. Our work represents an early model that has been successful in scaling to 29 different genes with associated genetic conditions in four clinical domains. Work is ongoing to optimize informatics tools; and to identify best practices for translation to smaller healthcare systems