Sickle Cell Data Collection Program Report: Data to Action - Impact of SCDC Data

Sickle Cell Data Collection Program (SCDC)

” This data highlight that SCD is a significant problem in providers’ hometowns. In my presentations, these data get providers’ attention.”

-James Eckman, MD

SCDC data are used to improve policy, healthcare practices, and treatments that in turn, improve the health outcomes and healthcare access for people with SCD. Findings from the SCDC program are shared with the public including providers, healthcare administrators, pharmaceutical companies, SCD community organizations, policymakers, public health organizations, and patients and their advocates. Improving the lives of people with SCD requires the combined efforts of these partners to put SCDC data into action. Examples of how SCDC data are helping and can continue to help partners serve the needs of people with SCD are described below.

Healthcare providers

The SCDC program offers valuable insights to healthcare providers about improving care for SCD. Ongoing SCD surveillance in Georgia has determined where patients with SCD live within the state and what services they are receiving, which is essential to identifying and addressing gaps. For example, SCDC data have highlighted disparities (differences) in services between urban and rural areas and between services for pediatric and adult patients.

Female muslin doctor

SCDC data are useful in the clinical care setting when interacting with patients with SCD and their families.

County-specific data enable the SCDC program in Georgia to identify SCD “hot spots” (areas with higher concentrations of residents with SCD) and to make healthcare providers aware of them. “The data highlight that SCD is a significant problem in providers’ hometowns. In my presentations to these providers, these are the data that get their attention,” said James Eckman, MD, Professor Emeritus, Hematology and Medical Oncology, Emory University School of Medicine.

Dr. Eckman also uses data on death rates among people with SCD in presentations to dispel the myth that all patients with SCD still die young. “SCDC data show that people with SCD are now living longer than ever before and that providers need to think about health problems unrelated to SCD that older patients may develop.”

SCDC data are useful in the clinical care setting when interacting with patients with SCD and their families. Dr. Peter Lane, the director of the SCD clinic at Children’s Healthcare of Atlanta, has used SCDC death rate data to demonstrate the potential consequences of declining hydroxyurea (HU) use. Dr. Lane uses a chart that shows poorer health outcomes over time for patients who do not take HU compared with patients who do. This information shows teens with SCD how they can prevent complications such as organ damage and emphasizes the need for teens to take control of their health early on. By empowering patients with information about their own health and disease course, they are better prepared to self-advocate and to play an active role in decisions about their care.

Healthcare administrators

SCDC data, which include both administrative and clinical data, can help provide a more complete picture of clinical practice to healthcare administrators who may rely on administrative data alone. In a California study, administrative data suggested, “…the rate of transfusion for acute chest syndrome in SCD was low when, in fact, the rate was much higher…” at the three institutions studied, providing an inaccurate depiction of clinical practice12. The SCDC program uses multiple sources of data and more accurately reflects diagnoses related to SCD and the relevant procedures performed in clinical care settings.

Pharmaceutical companies

The landscape of care and treatment for people with SCD is expected to shift as pharmaceutical companies invest in testing SCD-related drugs in clinical trials. The SCDC program tracks people living with SCD and their health outcomes, which can help forward-thinking pharmaceutical companies determine

  • Markets for new drugs and where these markets are located
  • Uptake of new drugs at the population level
  • Impact of new drugs on use of healthcare services
  • Changes in health outcomes as a result of new drugs.

” Data is everything, it drives every resourcing decision we make.”

-Jung Choi, Global Blood Therapeutics

The SCDC program will establish a health profile of people with SCD living in SCDC states before pharmaceutical companies introduce new drugs, providing a baseline for comparison with findings determined after these drugs hit the market. The wealth of information provided by the data helps these companies understand the unmet needs of the SCD population, how to allot funds for clinical trials, and how trends like mass migration are changing the landscape of the disease.

“Data is everything, it drives every resourcing decision we make,” says Jung Choi, Chief Business and Strategy Officer at Global Blood Therapeutics, a  funding partner of the SCDC program. “We found out through the data that access to care was a big issue, a big hurdle. We realized that we needed to quickly increase our investment in health policy and government affairs.”

SCD community organizations

Diverse people holding hands in a circle

SCDC data are valuable in advocating for better healthcare access for people with SCD.

Community organizations for people with SCD often need grants and funding for program-building. SCDC data can be an incredibly valuable addition to grant proposals to help make a more robust argument for funding support. When writing these proposals, an organization’s mission and funding needs are often communicated, but it is also important to write from the funder’s perspective. Funders are often interested in how their investments will help fulfill unmet needs. Organizations can use SCDC data in grant proposals as evidence of the problems that the funding will help solve by including information such as burden of disease, health outcomes, and health disparities.

SCDC data are also valuable in advocating for better healthcare access for people with SCD. For example, the SCDC program found that 1 in every 2 adults with SCD in California (about 1,500 people) live in Los Angeles (LA) County. The data showed no places in the county where adults with SCD could receive quality, comprehensive, and coordinated care. A team of SCD experts used these data to inform LA County’s Department of Health Services about the urgent needs of the SCD community. SCDC data, together with the determination and hard work of many partners, led to the establishment of the Adult Sickle Cell Clinic at the Martin Luther King, Jr. Outpatient Center, located within 5 miles of most patients with SCD in LA County, in order to address those needs.


Organizations such as the American Society of Hematology (ASH) meet with policymakers on Capitol Hill to raise awareness about SCD and to explain the health disparities faced by the SCD population. SCDC data can equip these organizations with answers to common questions asked by policymakers

  • What does access to care look like for people with SCD?
  • What are the costs associated with the health disparities of SCD?
  • What are the gaps in care?
  • Where do people with SCD live and how closely located are they to providers and healthcare services?

In order to address policy that can lead to tangible outcomes, such as improved reimbursement for care and treatment of SCD and increased SCD expertise among healthcare providers, policymakers must realize how SCD is affecting their citizens. SCDC data can be used to develop educational materials, such as maps based on an elected official’s  jurisdiction, tailored to policy audiences that demonstrate the landscape of SCD.

Other Department of Health and Human Services projects

The public health community is responsible for providing evidence of the important problems faced by people with SCD. SCDC data are critical to demonstrating these problems to the healthcare industry,  policymakers, the SCD community, and the public. SCD issues, such as the peak in complications during young adulthood and inadequate primary care among older patients, must be widely shared with audiences who are able and willing to address these issues.

SCDC data can be incredibly useful in evaluating the impact of public health programs. Several federal initiatives require health outcomes data to document how well their activities are working. One such initiative is Healthy People, which provides science-based, 10-year national objectives to improve the health of all Americans. The Healthy People 2020 SCD objectives, released in 2010, included

  • Increasing the proportion of children with SCD who receive routine penicillin treatment called prophylaxis (has lowered the risk of death in children with SCD) from 4 months to 5 years of age.
  • Reducing hospitalizations due to preventable complications of SCD among children 9 years of age and under.

These objectives were archived in 2015 due to a lack of a national-level data source. Once the SCDC program expands to include more states, it will close this data gap and prove incredibly valuable in demonstrating how well public health activities that aim to reach these objectives are working.

Additionally, the Health Resources and Services Administration’s Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program (SCDTDP), funds 5 regional networks to improve the prevention and treatment of SCD. The National Institutes of Health’s Sickle Cell Disease Implementation Consortium (SCDIC) works to improve the care of adolescents and adults with SCD. SCDC data are able to enhance activities for the SCDTDP and SCDIC programs operating in Georgia and California.

Patients and families

The SCDC program equips patients with SCD and their families with educational resources they can use to play a more active role in decisions about their care. These materials include

These products help empower patients to

  • Self-advocate when engaging with healthcare professionals who may not be familiar with the complexities of SCD
  • Stay up-to-date on the latest SCD research findings
  • Connect with the larger SCD community.