Broadening the Reach, Impact, and Delivery of Genetic Services (BRIDGE) Family History Interviews, New York and Utah, 2021 (ICPSR 38831)

Version Date: Jun 22, 2023

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Principal Investigator(s):
Kimberly A. Kaphingst, University of Utah

Series:

https://doi.org/10.3886/ICPSR38831.v1

Version V1

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Summary

This qualitative study was conducted in two United States health care systems. The research team conducted semi-structured interviews with medical assistants, physicians, and interpreters with experience collecting family history for Spanish-speaking patients and examined barriers and facilitators to family history collection.

Citation

Kaphingst, Kimberly A. Broadening the Reach, Impact, and Delivery of Genetic Services (BRIDGE) Family History Interviews, New York and Utah, 2021. Inter-university Consortium for Political and Social Research [distributor], 2023-06-22. https://doi.org/10.3886/ICPSR38831.v1

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Funding

United States Department of Health and Human Services. National Institutes of Health. National Cancer Institute (U01CA23282603-S1)

Subject Terms

Geographic Coverage

Restrictions

This data collection may not be used for any purpose other than statistical reporting and analysis. Use of these data to learn the identity of any person or establishment is prohibited. To protect respondent privacy, this data collection is restricted from general dissemination. To obtain this file, researchers must agree to the terms and conditions of a Restricted Data Use Agreement in accordance with existing ICPSR servicing policies.

Distributor(s)

Inter-university Consortium for Political and Social Research
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Time Period(s)

2021

Date of Collection

2021-03 -- 2021-04 (Utah Interviews), 2021-05 -- 2021-08 (New York Interviews)

Data Collection Notes

  1. This study is part of Washington University in St. Louis (WUSTL) Qualitative Data Sharing (QDS) project.

  2. ICPSR has zipped the 28 interview transcripts into a qualitative data package. This package is available for restricted download. Please refer to the ICPSR README documentation for more information.

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Study Purpose

Gaps in family history for patients who self-identified as Spanish-speaking and/or Hispanic could exacerbate disparities in multiple preventive health interventions in addition to referral for cancer genetics services. The purpose of this qualitative study was to explore factors that might affect the collection of family history, and cancer family history, in particular, for Spanish-speaking and Hispanic patients in primary care settings in two large health care systems with different structures and patient populations.

Study Design

The study was conducted in the primary care setting in major health care systems in Utah and New York. The Utah health system serves a vast geographic area encompassing both rural and urban settings. In New York, the health system is made up of a large number of ambulatory health centers and affiliated hospitals serving a diverse population in the New York metropolitan area. Both health systems used the same electronic health records (EHR) system with a standardized module for family history collection. The study recruited providers, support staff, and interpreters employed or contracted by the respective health care systems with experience providing services for Spanish-speaking patients.

A semi-structured interview guide was designed to understand: the current workflow for collecting and recording family history for Spanish-speaking and Hispanic patients; the type of family history collected; the barriers and facilitators to collecting family history information from these patients; and suggestions for changes to the workflow. The instrument was piloted with 3 medical assistants (MAs) in the participating Utah health care system via research assistants trained by a researcher with extensive qualitative research experience. A modified interview guide was created for interpreters.

In both locations, the research team initially contacted office managers of the selected health centers. The office managers then sent materials about the study to interpreters and providers/MAs and coordinated scheduling with the interviewer. Interviews (n=28) were conducted by trained research assistants in Utah from March-April 2021 and by an experienced qualitative researcher in New York from May-August 2021. Semi-structured interviews were administered in person in Utah (n=15) and via video in New York (n=13) due to COVID-19-related restrictions on non-clinical visits to the health center. The average interview time was 19 minutes, with minimum and maximum times of 11 and 30 minutes, respectively. Interviews were digitally recorded and professionally transcribed. The research team did not review transcripts directly with participants but preliminary findings were discussed with clinical leaders in Utah.

Sample

Purposive sampling was used to select clinics in Utah that serve many Spanish-speaking patients and ambulatory centers in varied locations across the metropolitan area in New York. The research team estimated a sample size of 5 interpreters and 8-10 medical assistants (MAs) or providers for each health system, and interviews continued until data saturation was achieved. The final sample included 6 physicians (all from New York), 11 MAs (9 from Utah and 2 from New York), and 11 interpreters (6 from Utah and 5 from New York). Limited demographic data were collected from participants in order to protect their confidentiality.

Time Method

Cross-sectional

Universe

Health care providers, support staff, and interpreters in major health care systems in Utah and New York with experience providing services for Spanish-speaking patients.

Unit(s) of Observation

Individual

Data Type(s)

Mode of Data Collection

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Original Release Date

2023-06-22

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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.

  • ICPSR usually offers files in multiple formats for researchers to be able to access data and documentation in formats that work well within their needs. If you have questions about the accessibility of materials distributed by ICPSR or require further assistance, please visit ICPSR’s Accessibility Center.

  • One or more files in this data collection have special restrictions. Restricted data files are not available for direct download from the website; click on the Restricted Data button to learn more.