Visual Displays of Qualitative Data to Advance Patient Centered Outcomes Research [Methods Study], United States, 2015-2020 (ICPSR 39506)
Version Date: Oct 22, 2025 View help for published
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Daniel Dohan, University of California-San Francisco
https://doi.org/10.3886/ICPSR39506.v1
Version V1
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Summary View help for Summary
Data collected from interviews and group discussions, called qualitative data, can help researchers understand people's experiences, values, and cultures. But large amounts of qualitative data can be hard to show in a way that's easy for people to understand.
In this study, the research team created charts called ethnoarrays. These charts use color coding to show individual stories and overall patterns in qualitative data. The team wanted to learn whether ethnoarrays were useful and easy to understand.
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Study Purpose View help for Study Purpose
To develop a new qualitative data display, called an ethnoarray. The study had four specific aims. Aim 1 was to propose standards for qualitative rigor in PCOR. Aim 2 was to develop working ethnoarrays by conducting secondary analysis of ethnographic data from two previous studies of cancer patients' decision-making (individuals recruited from breast, melanoma, gastrointestinal, or genitourinary oncology clinics). Aim 3 sought to collect primary data from a new cohort of cancer patients (individuals recruited from clinics focused on lung cancer, hematological malignancies, or phase 1 clinical research) in order to test and refine methods for collecting and analyzing qualitative data intended for use in an ethnoarray. For aim 4 we engaged the project Stakeholder Advisory Board regarding the utility, potential uses and dissemination of the ethnoarray.
Study Design View help for Study Design
The research team developed a new type of qualitative data display called an ethnoarray. Ethnoarrays are charts that use color coding to reveal patterns within large qualitative data sets while preserving subject-centered narratives.
The research team used two methods to evaluate the usefulness and interpretability of ethnoarrays. First the team asked an advisory board of seven social scientists, six patients, two caregivers, and five clinicians to provide feedback on prototype ethnoarrays.
Then the research team used ethnoarrays to conduct a secondary data analysis of two sets of patient interviews: one set from 96 patients with late-stage cancer and another set from 36 patients who were newly diagnosed with breast cancer. The team identified concepts and behaviors, or themes, related to cancer treatment decision making within each of the two data sets. The ethnoarrays listed patients in the rows and themes in the columns. The color coding indicated the presence or absence of themes within an observation. The team developed statistical models that clustered patients together based on similarities in themes, which revealed patterns in the data.
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Patients with late stage cancer at a comprehensive cancer centers and patients with newly diagnosed breast cancer at a private oncology practice
Data Source View help for Data Source
Interview transcripts and observational data related to cancer treatment decision making among 96 patients with late-stage cancer at 2 Comprehensive Cancer Centers and 36 newly diagnosed patients with breast cancer at a private oncology practice
Notes
The public-use data files in this collection are available for access by the general public. Access does not require affiliation with an ICPSR member institution.
This study is maintained and distributed by the Patient-Centered Outcomes Data Repository (PCODR). PCODR is the official data repository of the Patient-Centered Outcomes Research Initiative (PCORI).