Project Overview
People with cancer often experience financial toxicity on top of the burden of having a serious illness which negatively impacts their health and well-being across socioeconomic levels and insurance types. Those from socioeconomically marginalized groups are particularly affected. Financial toxicity is associated with diminished clinical outcomes, reduced quality of life, and persists for years. High-deductible plans, cost-sharing, and unexpected out-of-pocket costs contribute to the direct and indirect cost burden those diagnosed with cancer experience. Limited transparency about insurance and costs of care can prevent patients from preparing and can surprise them with high bills. Improving Cancer Patients’ Insurance Choices (I CAN PIC) was originally designed to facilitate insurance choice for those interested in private insurance. After Medicaid expansion in 2021 and older patients on Medicare requesting additional information and resources, this study aims to adapt I CAN PIC to the Cancer Affordability Resources (CARE) Tool. To adapt I CAN PIC, we explored end users’ perspectives when reviewing the web-based tool and participants discussed factors that may impact implementation.
The project is also referred to with the acronym ACCERT given its involvement with the Washington University Advancing Cancer Control Engaged Research through Transformative Solutions Center funded by the National Institutes of Health (NIH).
Data and Data Collection Overview
From November 2024-May 2025 we conducted semi-structured interviews with healthcare personnel (i.e., social workers, financial navigators, billing specialists, primary care physicians, oncologists, physician’s assistants, and nursing staff) and patients diagnosed or treated for lung, prostate, colorectal, or gynecological cancer in the past 3 years. 36 participants recruited from a rural and urban healthcare system visited an interactive web-based tool designed to support cancer patients making insurance decisions and provided feedback in interviews. Visuals from the website interviewees were responding to were previously included as a Supplemental Appendix in an accompanying article (Politi et al., 2020. The Oncologist) fully cited in the Data Narrative document and Related Publications metadata element.
We coded written transcripts based on the Consolidated Framework for Implementation Research (CFIR) and the 5As conceptual framework of access (availability, accessibility, accommodation, affordability, and acceptability). Data were analyzed using rapid analysis and organized thematically.
Selection and Organization of Shared Data
The data files shared here encompass the 36 de-identified interview transcripts with healthcare personnel (HP) and cancer patients (PT), as well as their demographics, reported via a survey.
The numbering of the transcripts follows a single sequence for all participants, with each transcript also classified as either “HP” (i.e., social workers, financial navigators, billing specialists, primary care physicians, oncologists, physician’s assistants, nursing staff) or “PT” (patients diagnosed with or treated for lung, prostate, colorectal, or gynecological cancer in the three years prior to recruitment). Due to an administrative error, the numbering starts at 02, but there are no missing participants.
An initial round of transcript de-identification was performed by a third-party transcription company with redactions marked < >, while the depositors performed a secondary review. QDR personnel performed a third random spot-check on a third of the transcripts and found no instances that needed further redactions. The demographic survey was minimally redacted, by removing the specific sites from which participants were and the self-reported specific job descriptions they provided.
The documentation files shared consist of the informed consent document used in the study, the interview guide used for healthcare personnel, the interview guide used for patients, basic demographic questionnaires, this Data Narrative, and an administrative README file. |
