Research Proposal: Patient Experiences and Systemic Barriers in Chronic Illness Healthcare Navigation

 

1. Introduction
Chronic illnesses (e.g., diabetes, autoimmune disorders, cancer) require long-term care coordination, yet patients often face fragmented healthcare systems marked by administrative complexity, inequitable access, and inadequate provider communication. This study investigates how patients with chronic conditions experience healthcare navigation, focusing on structural barriers (e.g., cost, insurance), interpersonal challenges (e.g., clinician-patient dynamics), and coping strategies. With 60% of U.S. adults living with at least one chronic disease (CDC, 2023), understanding these experiences is critical for improving care delivery and patient outcomes.

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2. Research Objectives

1. To map common pain points in healthcare navigation (diagnosis delays, specialist access, care coordination).

2. To analyze how socioeconomic status (SES), race, and geography exacerbate barriers.

3. To identify patient-developed strategies for self-advocacy and system navigation.

4. To evaluate the role of digital tools (e.g., patient portals, telehealth) in mitigating challenges.

5. To propose policy and practice reforms for patient-centered care.

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3. Literature Review

Existing research highlights:

• Structural Barriers:

  • Insurance gaps and high out-of-pocket costs (Berkowitz et al., 2021)

  • Specialist wait times and rural "healthcare deserts" (Eberhardt et al., 2021)

• Interpersonal Barriers:

  • Medical gaslighting, especially for women and BIPOC patients (Hoffman & Tarzian, 2023)

  • Poor provider communication (Zolnierek & DiMatteo, 2009)

• Patient Agency:

  • Online communities as information sources (Lasker et al., 2020)

  • "Shopping" for empathetic providers (Dixon-Woods et al., 2006)

Gaps:

• Intersectional analysis of disability + marginalized identities.

• Impact of AI/telehealth on navigation experiences.

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4. Methodology

Design: Critical ethnography + participatory action research (PAR), centering patient voices.

Participants:

• Phase 1: 30 interviews with chronically ill patients (diverse in illness type, SES, race, urban/rural).

• Phase 2: 5 co-design workshops with patients/providers to prototype solutions.

Data Collection:

• Patient Journeys: Timeline maps of care experiences.

• Go-Along Interviews: Observe healthcare visits (with consent).

• System Mapping: Identify institutional inefficiencies.

Analysis:

• Thematic analysis (Braun & Clarke, 2006) of interview data.

• Policy analysis of local/state healthcare regulations.

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5. Expected Challenges

• Recruitment: Stigma/fatigue may deter participation.

• Bias: Overrepresentation of high-literacy patients.

• Generalizability: U.S.-centric focus may limit applicability.

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6. Significance

This study will:

• Expose systemic inequities in chronic illness care.

• Empower patients via co-designed navigation tools.

• Advocate for insurance/policy reforms (e.g., prior authorization reform).

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7. Ethical Considerations

• Trauma-informed protocols for discussing diagnostic delays.

• Compensation for participant time/transportation.

• Anonymization for stigmatized conditions (e.g., endometriosis).

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8. Timeline

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Phase	Duration
IRB approval & recruitment	3 months
Interviews & journey mapping	6 months