Ethical Handling of Occupational Health and Safety Data in the Fire Service: Empirical Interview and Focus Group Study of Firefighter and Fire Service Leadership Privacy Preferences

Background: There are ongoing efforts to collect larger and higher-quality amounts of occupational health and safety data to better understand and prevent injuries and fatalities among high-risk workers, such as firefighters. Digital health systems including wearable technologies, mobile apps, or internet-based data collection platforms could collect large amounts of sensitive data, but there is little evidence on worker and employer perspectives on data privacy in the fire service. Objective: Our study examined firefighters’ and fire service leadership’s preferences regarding occupational health and safety data privacy. Methods: We conducted interviews and focus groups with career firefighters in Maryland and Virginia; interviews with union representatives and department-level leaders in each state; and interviews with national-level fire service leaders in advocacy, government, and research organizations (March to November 2023). Interviews and focus groups were audio recorded and transcribed. We analyzed transcripts using thematic analysis. Results: The sample included 31 career firefighters, 2 union leaders, 11 national leaders, and 21 department-level leaders (65 total participants from 35 interviews and 4 focus groups). We identified 4 themes: acceptability of data access, sharing, and reporting practices; data sharing and access preferences; appropriate use of firefighter data; and the need for improved communication. Leaders described firefighters’ concerns about job loss and loss of privacy. Firefighters expressed general preferences that their data be deidentified and not shared widely, and they identified mental health data as important but particularly sensitive information. Firefighters also expressed frustration about sharing data with researchers or their departments without knowing the purpose or outcomes. Both firefighters and leaders emphasized the need for enhanced communication and translation of data for firefighters. Conclusions: Fire service leaders held more concerns about the use and sharing of occupational health and safety data than firefighters, but both groups identified ways to further safeguard firefighter data and improve communication about health and safety data. Future fire service data collection should incorporate privacy protections, such as limiting the collection of identifiable information and restricting data access. Data collection should be accompanied by clear communication about the purpose of the data collection, how firefighter data will be used and accessed, and the interpretation of the results. Future digital health interventions should integrate these data privacy protections to respect firefighter preferences and contribute to acceptability and uptake.