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 conducted a needs-based community assessment of barriers to care for youth and adults with sickle cell disease. Participants were patients with sickle cell disease, the providers who care for them, directors of services where they seek care, and interested community members who had ideas about the needs of patients with sickle cell disease and how to address them. We selected providers and people with sickle cell disease to provide us with this information via focus group or individual interviews. We also asked providers and people with sickle cell disease to complete a survey about the issues.
Information from the needs assessment is informing the next phases of the SCCCI. We are creating a registry of youth and adults within our five county area in order to track inpatient, outpatient and emergency use; complications; and such factors linked with health as access to housing, education and good medical care. We are designing interventions informed by the needs assessment focused 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.
The registry is the next crucial step for the Sickle Cell Care Coordination Initiative. We are collecting information on symptoms, treatments, and concerns about medical care for youth and adults with sickle cell disease. This information will help us to see where improvements can be made in the medical care system, and with regard to community support, for sickle cell disease.