Why Implementation Science?
NHLBI made a commitment to funding the Sickle Cell Disease Implementation Consortium in response to evidence that only a fraction of discovery science reaches patients in clinical practice. Americans receive, on average, only half of recommended preventive, acute and long-term quality health care. There is no better example of this issue than sickle cell disease, where evidence based guidelines are greatly underutilized. As a result, adults with sickle cell disease experience high mortality, severe pain, progressive decline in functional status and lack of access to knowledgeable care. The barriers to care, on the parts of both patients with sickle cell disease and their providers, are poorly understood, although some patients face distrust and discrimination when they do try to seek care. Implementation science takes a “systems approach” to improve health outcomes, engaging multiple sectors and multiple modalities to define and prioritize health outcomes and care issues, and to identify barriers to care. The Sickle Cell Disease Implementation Consortium is the first research program to use implementation science to identify and address barriers to quality care in sickle cell disease.
What is the plan?
We will be conducting a needs-based community assessment of barriers to care for youth and adults with sickle cell disease. Participants will be patients with sickle cell disease, the providers who care for them, directors of services where they seek care, payers of healthcare services, and interested community members who have ideas about the needs of patients with sickle cell disease and how to address them. We will select some providers and people with sickle cell disease to provide us with this information via separate focus group or individual interviews. We will also ask a larger group of providers and people with sickle cell disease to complete a survey about the issues.
Information from the needs assessment will inform the next phases of the SCCCI. We will create a registry of youth and adults within our five county area in order to track utilization, complications and social determinants of health. We will design interventions informed by the needs assessment that tentatively focus on improving the quality of acute and preventive care and patient self-management. By working with the other sites within the Sickle Cell Disease Implementation Consortium, we will be able to track our intervention outcomes across one of the largest U.S. cohorts of youth and adults with sickle cell disease to date.