Knowledge & Action

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Home 2017-05-21T02:25:26+00:00

Latest Actions

  • Advocacy – AB1488

    Dr. Keith Quirolo has been successful in drafting and moving forward a bill in the California Legislature to improve sickle cell disease care in the state of California.

  • Webinar 7

    Evaluating and Addressing Challenges to Optimal Sickle Cell Disease Care, Within the Health Literate Care Model

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Welcome to SCCCI

Sickle Cell Care Coordination Initiative

Who we are …

The Sickle Cell Care Coordination Initiative (SCCCI) seeks to improve care provided to youth and adults with sickle cell disease in Northern California. We are one of 8 programs in the U.S. funded by the National Heart, Lung and Blood Institute (NHLBI) to use implementation science to improve outcomes for individuals with sickle cell disease between the ages of 15 and 45 years.

The SCCCI brings together experts in sickle cell disease clinical care and clinical research, health services research, implementation and participatory research and emergency medicine. Our core team also includes individuals with sickle cell disease, their family members and dedicated community members.

Our aims are …
  1. increase the number of youth and adults with sickle cell disease who receive preventive care;
  2. support providers so they increase their adherence with evidence based guidelines for sickle cell disease care; and
  3. support youth and adults with sickle cell disease to access needed resources within their communities to improve their quality of life and quality of care. Our primary goal is to decrease the preventable morbidity and mortality that this population is vulnerable to.

The work of the SCCCI will take place in Alameda, Contra Costa, Sacramento, San Francisco and Solano counties.

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 practice1. 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 underutilized2. 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 Implemen- tation 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.

Join our research !

SCCCI: 5 years, 5 counties, 3 phases.

Community Needs Assessment

Through dialog and determination we’ll find a way.

Why:

People with sickle cell disease may have trouble receiving good care in emergency rooms and with finding health care providers who can help them prevent medical problems. We want to find out from you, and from your providers, how to work together so that you can live your best life possible.

What:

We will interview some of you in either a group or by yourself about your sickle cell disease care. We will ask all of you to fill out a brief survey. You will receive a gift card as thanks.

Who:

We are looking for 15 – 45 year olds with any diagnosis of sickle cell disease in Alameda, Contra Costa, Sacramento, San Francisco and Solano counties.

When:
Interviews and surveys will be starting in May 2017.
Join our research!