Patient Time as a Hidden Cost in HIV Care A Systems Framework for Modeling Engagement Using Public Data

Alexander Yates
Independent Researcher | Person with Lived Experience, HIV Care System | Ryan White CQII Fellow, HRSA | Co-Author, Clinical Trials (2020)

Status: Working Paper
Phase: DEFINE (Lean Six Sigma DMAIC Framework)
Version: 1.0

Keywords: HIV Care Continuum, Patient Time, Healthcare Access, Systems Modeling, Engagement, Quality Improvement

Suggested Citation: Yates A. Patient Time as a Hidden Cost in HIV Care: A Systems Framework for Modeling Engagement Using Public Data. Independent Working Paper. Version 1.0; 2026.

Data Source: Publicly Available Datasets

Independence Statement: This manuscript presents an independent conceptual framework developed using publicly available data and general systems modeling principles. It does not rely upon proprietary institutional data, internal operational models, or patient-level information.

Abstract

Background: Healthcare systems often measure provider time with precision, while patient time associated with accessing, coordinating, and completing care is rarely operationalized as a measurable system variable in quality improvement frameworks. This unmeasured burden may shape engagement, continuity, and access in ways not fully captured by traditional performance metrics.

Objective: This manuscript proposes a conceptual framework for treating patient time as a systems-level construct that can be examined as a hidden cost influencing healthcare engagement. HIV care is used as the initial application context because of publicly available data sources, established engagement frameworks, and broader relevance to continuity-of-care challenges in safety-net populations.

Framework Approach: Using publicly available HIV care data, systems thinking principles, and Lean Six Sigma DMAIC methodology, this working paper organizes patient time burden into conceptual components, including travel, waiting, administrative coordination, and follow-up logistics. The framework is presented as the DEFINE phase of a phased analytical development structured around the DMAIC sequence.

Conceptual Contribution: While patient time cost has been examined in health economics for decades, this manuscript contributes a systems modeling and quality improvement operationalization angle that has been less consistently applied in HIV care continuum research. The framework is offered as a structured starting point for measurement development, intervention design, and broader discussion of how patient time may be incorporated into systems analysis.

Discussion: As an independent conceptual manuscript representing the DEFINE phase of a planned DMAIC analysis, this work is intended to support further exploration rather than present validated empirical findings. Subsequent phases will examine measurement development, exploratory analysis, intervention design, and sustainability frameworks.

Researcher Positionality

The author brings a dual perspective to this work: direct personal experience navigating Ryan White-funded HIV care as a patient, and subsequent professional experience working within HIV service delivery systems. This positionality shapes the research questions pursued, particularly around constructs that are visible in operational practice but insufficiently captured in traditional measurement frameworks. Where this perspective informs specific framing choices, it is treated as a methodological asset rather than a source of bias to be neutralized.

Introduction

Healthcare delivery systems measure provider time with considerable precision. Appointment durations, panel sizes, and clinician throughput are tracked, optimized, and built into reimbursement structures. By contrast, the time patients spend navigating care, including travel, waiting, scheduling, and follow-up coordination, is rarely operationalized as an explicit variable in quality improvement or systems analysis frameworks.

This manuscript begins from a simple premise:

Patient time may function as a hidden system cost that shapes engagement and continuity in ways traditional performance metrics do not fully capture.

While patient-centered care frameworks increasingly acknowledge the burden experienced by patients, time burden often remains untracked in operational systems, unpriced in resource allocation models, and structurally invisible in quality measurement frameworks.

Patient time may influence whether a patient attends care, how consistently they remain engaged, how systems allocate resources, and how continuity barriers accumulate across the care continuum.

HIV care is used here as the initial application context for three reasons. First, publicly available data sources through HRSA Ryan White program reporting and CDC HIV surveillance support independent conceptual exploration. Second, the HIV care continuum provides an established engagement framework against which patient time variables can be conceptually mapped. Third, the population served by Ryan White-funded programs disproportionately experiences structural access barriers, making patient time burden a particularly salient construct in this context.

This manuscript represents the DEFINE phase of a planned DMAIC analysis. Subsequent versions will address measurement development (MEASURE), exploratory analysis (ANALYZE), intervention design (IMPROVE), and sustainability frameworks (CONTROL).

Prior Work and Contribution

Patient time as a determinant of healthcare utilization is not a new concept. Grossman’s foundational health demand model (1972) explicitly incorporated time cost as a factor influencing healthcare consumption, building on Becker’s earlier work on time allocation theory (1965). Andersen’s Behavioral Model of Health Services Use has long included time and access dimensions as enabling factors in care utilization.

In HIV-specific contexts, transportation barriers, appointment adherence, and structural access challenges have been documented across multiple studies of Ryan White-funded programs and other safety-net delivery systems. Wait time research and patient experience measurement constitute their own established literatures.

What this manuscript contributes is not the recognition that patient time matters. Rather, it is the operationalization of patient time as a systems-level construct within a Lean Six Sigma quality improvement framework, anchored in publicly available data, and structured for phased analytical development. This operationalization angle has been less consistently applied in the HIV care continuum literature, particularly in formats designed to support institutional adoption and quality improvement implementation.

The framework is therefore positioned not as a novel concept but as a practical bridge between an established research construct and operational systems analysis.

Framework

For purposes of this manuscript, patient time refers to the cumulative burden associated with accessing and completing care interactions across the HIV care continuum.

This burden involves multiple components, each with different observability characteristics in current data systems:

Table 1. Conceptual Components of Patient Time
Component Example Description Observability
Travel Time to and from care Partially observable
Waiting Time before receiving care Often untracked
Administrative Scheduling and coordination tasks Largely invisible
Visit Time within care interaction Indirectly measured
Post-care Pharmacy, follow-up, logistics Rarely measured

Rather than treating these components only as inconveniences experienced by individual patients, this framework proposes they be conceptualized as system-level burdens with potential implications for engagement, retention, and care continuity at the population level.

Measurement Limitations

Existing healthcare data structures present several challenges for examining patient time burden as a systems variable:

  • Fragmented data systems across providers, payers, and wraparound service organizations
  • Incomplete or inconsistently recorded variables related to patient-side time
  • Reliance on indirect proxies rather than direct measurement
  • Limited standardized definitions across programs and reporting frameworks

Working insight: Patient time may not be absent from healthcare systems. It may be structurally unmeasured.

Framework Scope

This working paper, representing the DEFINE phase of the DMAIC sequence, is intended to:

  • Define patient time as a conceptual construct
  • Examine possible relationships between time burden and engagement
  • Identify structural contributors to burden
  • Support development of a systems-oriented framework for subsequent phases

This manuscript does not present a validated model. It presents a framework intended for refinement through subsequent DMAIC phases.

Toward Measurement Development

Potential next steps for the MEASURE phase may include:

  • Operationalizing candidate patient-time variables
  • Identifying measurable proxies in HRSA Ryan White and CDC public datasets
  • Assessing data completeness and quality across available sources
  • Exploring preliminary modeling approaches grounded in published population parameters

These directions are presented as future development pathways rather than completed analytic outputs.

Discussion

This framework suggests patient time may warrant consideration not only as an experiential burden, but as a measurable systems variable with implications for quality improvement, engagement modeling, and care continuum performance.

If further developed through subsequent DMAIC phases, this construct may contribute to broader discussions of how systems define, measure, and address the unmeasured costs that shape patient engagement in safety-net care environments.

References

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Becker GS. A theory of the allocation of time. The Economic Journal. 1965;75(299):493-517.

Centers for Disease Control and Prevention. HIV Surveillance Reports. Atlanta, GA: U.S. Department of Health and Human Services.

Grossman M. On the concept of health capital and the demand for health. Journal of Political Economy. 1972;80(2):223-255.

Health Resources and Services Administration (HRSA). Ryan White HIV/AIDS Program Annual Client-Level Data Reports. Rockville, MD: U.S. Department of Health and Human Services.

Health Resources and Services Administration (HRSA), Center for Quality Improvement and Innovation. Quality Improvement Resources for Ryan White HIV/AIDS Program Recipients.

Mugavero MJ, Norton WE, Saag MS. Health care system and policy factors influencing engagement in HIV medical care: piecing together the fragments of a fractured health care delivery system. Clinical Infectious Diseases. 2011;52(Suppl 2):S238-S246.

Yehia BR, Stewart L, Momplaisir F, et al. Barriers and facilitators to patient retention in HIV care. BMC Infectious Diseases. 2015;15:246.

Whetten K, Reif S, Whetten R, Murphy-McMillan LK. Trauma, mental health, distrust, and stigma among HIV-positive persons: implications for effective care. Psychosomatic Medicine. 2008;70(5):531-538.

Co-authored research: COVID-19 impact on multi-site recruitment and enrollment. Clinical Trials. 2020;17(5):501-504. doi:10.1177/1740774520946270.