In 2014, the Division of Environmental and Occupational Health Sciences (EOHS) at the University of Illinois at Chicago (UIC) School of Public Health established the Black Lung Center of Excellence (BLCE). This was accomplished with grant funding (U3ARH27243) from the Federal Office of Rural Health Policy, Health Resources and Services Administration (HRSA). The BLCE developed the Black Lung Clinical database for the storage and evaluation of clinical information on current and former miners treated at participating Black Lung Clinics Program (BLCP) sites.
The Black Lung Clinical Research database addresses the need to elucidate the impact of the broader spectrum of respiratory disease. The purpose of the database is the collection and evaluation of medical data of miners at risk for occupational coal mine dust lung diseases due to workplace exposures including dust, noise, fumes, and chemicals. The database is a secure, HIPAA compliant, web-based application to provide the centralized collection, analysis, and management of current and former miner total worker health data. It also provides the analysis of occupational health measures to support the development of policies and promote effective practices for future funding of Black Lung programming.
The database utilizes the Research Electronic Data Capture (REDCap) application at UIC for data collection. Access to the database is password protected and UIC Institutional Review Board approved. The Center of Excellence database rollout was fall 2015. The initial rollout included six Black Lung Clinics from three HRSA grantees. Since that time, the number of participating clinics has grown to seventeen clinics from eight grantees. REDCap currently has data on more than 6,000 miners. The Center of Excellence is poised to accept more clinics for participation.
In late January 2018, the Center of Excellence staff provided technical assistance to HRSA and a consulting firm to coordinate and develop a patient-level data system with corresponding data variables, and the means to best align this system with REDCap.