Dissertation Title:  "The Patient Role in Health Care Service Delivery"Interdependence between patients and providers is increasing in health care service delivery. The drivers of this dynamic are manifold. Innovation in biomedicine has increased the chronicity of disease and is shifting modalities of care from acute settings (bypass surgery) to the community (daily statin). Growing clinical complexity has increased logistical and coordination challenges in care delivery, while the higher costs that come with innovation have encountered a political economy emphasizing utilization management over price regulation. Normative commitments to patient-centeredness have increased efforts to include patients in care, such as in contributing to assessments of quality. Finally, burgeoning advances in consumer tech—such as telemedicine or remote monitoring—are beginning to accelerate the devolution of care from institutions to homes. This dissertation explores several facets of interdependence, making use of several new data sources and multiple methods.

Chapter 1: Patient Administrative Burden in the U.S. Health Care System (with Austin Frakt) is a descriptive, quantitative study using a novel national survey to examine the prevalence of patient administrative work and its association with delayed and/or foregone care among insured adults 18-64. We find 73% of respondents reported performing at least one administrative task in the past year. About one in three task-doers, or 24% of the population overall, reported delayed or foregone care due to an administrative task. Adjusted for demographics, disability status had the strongest association with administrative tasks and burden. The prevalence of delayed or foregone care due to administrative tasks is comparable to similar estimates of cost-related barriers to care. Enhancing measurement of patient administrative work and associated burdens may open new avenues for assessing quality, value, and patient experience.

Chapter 2: Dealing with health care bureaucracy: Doctors, patients, and fixers is an inductive, qualitative exploring the increasing administrative complexity at the point of care. Both patients and physicians describe substantial administrative burden, and report limited ability to cope with this work. In response to complexity, many health care settings deploy support roles, variously named care managers coordinators, navigators, facilitators. Roles creating a service out of expertise in navigating bureaucratic complexity may be described as fixers. Fixer roles have a common genesis, but the parameters of these jobs and the people who fulfill them are incredibly varied across and even within organizations. Fixers address an important challenge in care, but their potential is stymied by the lack of common understanding of what they’re expected to do. To improve service quality, clinicians and health care organizations should: (1) clarify administrative tasks and responsibilities at the point of care, with particular attention to the nebulous role of the fixer; (2) simplify and standardize administrative processes wherever possible.

Chapter 3: Using patient-reported outcomes data in performance measurement: program design and methodological issues investigates the emerging use of patient reported outcome measures (PROMs) in performance measurement. PROM-based performance measurement is gaining traction, but the appropriate adaptation and interpretation of PROM data for aggreate use remains a subject of debate. This analysis of PHQ-9 data from a commercial insurer’s PROM performance measurement initiative focuses on measurement and incentive design issues in longitudinal quality measures. I find several programmatic and methodological issues that merit further attention, primarily related to incomplete longitudinal data. For example, I find attrition in follow up screening meant that a complete measurement (pre/post data pair) was present only 55% of the time. And of those rescreened, 65% were rescreened within the performance incentive period. Targeted measurement and increasing the salience of incentives may improve data quality by enhancing collection.