State-University Partnership to Implement Public Health Surveillance for Sickle Cell Disease in Michigan

Abstract

Background

Sickle cell disease (SCD) is a rare genetic blood disorder that primarily affects Black and Hispanic racial and ethnic groups. It can lead to multiple life-long health problems and reduced life expectancy. Significant gaps remain in understanding disease progression and outcomes. As such, in 2020, the CDC funded 11 states to gather population-based health information about people with SCD through the Sickle Cell Data Collection (SCDC) program.

Objective

Our objective was to describe the methodology to establish the CDC-funded SCDC program in Michigan.

Methods

The Michigan SCDC program (MiSCDC) is a state-university partnership between the Michigan Department of Health and Human Services (MDHHS) and the University of Michigan (UM). To establish a public health surveillance system for SCD in Michigan, there were three main objectives: 1) implement standardized methods for SCD surveillance, 2) engage stakeholders with interest in SCD, and 3) communicate findings.

Results

To implement standardized methods for SCD surveillance, UM acquired, linked, and analyzed over a dozen sources of state-maintained and clinical data to identify and longitudinally follow people with SCD in Michigan. Data collection was authorized by a grant of public health authority from MDHHS and data use agreements. To date, the MiSCDC program has reported two years of aggregate-level surveillance data to the CDC, with reports to follow annually. To engage stakeholders, MDHHS convened a multidisciplinary team comprised of patients, families, physicians, and public health practitioners. The team meets biannually with a mission to build and maintain relationships, review surveillance goals, and develop plans for using MiSCDC findings. To communicate results, MDHHS developed a communication strategy to disseminate MiSCDC findings via emails, newsletters, briefs, and social media.

Conclusion

Development of a public health surveillance system using a state-university partnership is feasible to implement a state-wide data collection program for a rare, chronic disease. A fundamental strategy for the success of this surveillance program is the permissions allowed through a grant of public health authority from MDHHS. The MiSCDC state-university partnership is strategically structured to conduct surveillance activities, disseminate findings to the public, and inform public health decision-making to improve the lives of people with SCD. Together, by communicating MiSCDC data and findings to stakeholders, these objectives can inform policy and system change opportunities to improve patient care and services for those living with SCD, a population impacted by structural barriers to healthcare.