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Sickle cell is a genetic life-long disease characterized by episodes of severe pain, frequent hospitalizations, long-term organ damage and a shortened lifespan. Most physicians with expertise in sickle cell disease practice in academic healthcare centers or large medical centers. That means that there are large gaps in access to care. Lack of knowledge about the long-term effects of sickle cell disease and physician assumptions can lead to suboptimal care and a less desirable quality of life for these patients. 

The EMBRACE Network (Education and Mentoring to Bring Access to Care), is a project that seeks to expand access to quality care, improve care delivery, and provide knowledge and support through regular ECHO® clinics, like virtual grand rounds, patient case presentations will be combined with didactic learning and mentoring. We invite you to participate in these sessions to engage with a team of multi-disciplinary specialists around the management of sickle cell disease. 

ECHO® (Extension for Community Healthcare Outcomes), is an Internationally recognized tele-mentoring model that connects providers with specialists through regularly scheduled, interactive, tele-mentoring sessions. 

Benefits of ECHO® 

• • Specialists train community providers in an area outside of their expertise 
  • Specialists use low-cost videoconferencing to conduct tele-ECHO clinics 
  • Expands access to care for rural and underserved patients 
  • Rapid dissemination of best practices 
  • Providers receive CME/CE and MOC II/IV points by participating in virtual grand rounds.

 

Download the ECHO flyer here

NHLBI GUIDELINES

 

Access the NHLBI Guidelines for Evidence-Based Management of Sickle Cell Disease.

The purpose of the “Evidence-Based Management of Sickle Cell Disease: Expert Panel Report (EPR), 2014” is to synthesize the available scientific evidence on sickle cell disease and offer guidance to busy primary care clinicians. 

Readers should remember that the document is intended to provide guidance for management, not to be rigidly prescriptive. 

Developed by an expert panel composed of healthcare professionals with expertise in family medicine, general internal medicine, adult and pediatric hematology, psychiatry, transfusion medicine, obstetrics and gynecology, emergency department nursing, and evidence-based medicine. Panel members were selected by the National Heart, Lung, and Blood Institute’s (NHLBI’s) leadership. 

The purpose of these guidelines is to help people living with sickle cell disease (SCD) receive appropriate care by providing the best science-based recommendations to guide practice decisions. The target audience is primary care providers and other clinicians, nurses, and staff who provide emergency or continuity care to individuals with SCD. NHLBI sponsored the development of these guidelines to assist health care professionals in the management of common issues, including routine health maintenance, the recognition and treatment of common acute and chronic complications and comorbidities of SCD, as well as the indications for and monitoring of hydroxyurea and blood transfusion therapy. The guidelines address the care of infants, children, adolescents, and adults with SCD, with the goal of facilitating high-quality and appropriate care for all individuals with this disease.

 

The National Heart, Lung, and Blood Institute (NHLBI) published Evidence-Based Management guidelines in 2014 that focused on supporting primary care physicians to address challenges with access to quality.  Dissemination and implementation of these guidelines remain suboptimal. 

The Education and Mentoring to BRing Access to CarE (EMBRACE) Network is a regional collaborative of 8 southeastern states (AL, FL, GA, KY, MS, NC, SC, TN) committed to collectively engage with the SCD community and various stakeholders to:

1. Increase the number of providers adhering to NHLBI guidelines to provide care for persons with SCD 
2. Increase the pool of providers offering evidence based SCD care by disseminating technology based provider support tools (tele-mentoring and telemedicine) 
3. Develop and implement strategies to improve access to quality care in a SCD medical home with a focus on individual and family engagement. 

Education and Mentoring to BRing Access to CarE for SCD (EMBRACE)
Ifeyinwa (Ify) Osunkwo, MD, MPH
Ify.Osunkwo@carolinashealthcare.org
HRSA-17-078

 

Through regular ECHO® clinics, like virtual grand rounds, patient case presentations will be combined with didactic learning and mentoring. These sessions are open to health care providers who want to engage with a team of multi-disciplinary specialists around the management of sickle cell disease.

Benefits of ECHO®

• • Specialists in sickle cell disease train community providers in an area outside of their expertise.
  • Specialists use low-cost videoconferencing to conduct tele-ECHO clinics
  • Expands access to care for rural and underserved patients
  • Rapid dissemination of best practices
  • Providers receive CME/CE and MOC III/IV points for participating.

 

Just as implementation of the NHLBI guidelines vary greatly among healthcare institutions, the uptake of guideline-recommended interventions remains low among sickle cell patient warriors*.  

 

EMBRACE tackles this issue through Education, Engagement, and Empowerment.  

|^ See EMBRACE Education, EMBRACE Engagement, EMBRACE Empowerment ^|  

 

Principal Investigator(s): Osunkwo, Kanter, Strouse

Transition specialist(s): Coretta Jenerette

Community Engagement Partner(s): Sickle Cell Consortium

Healthcare Institution(s): Atrium Health

 

HRSA Sickle Cell Program Maps 

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1. Individuals living with sickle cell disease culturally refer to themselves as “Warriors” or “Sickle Cell Warriors”.  | Coined in early 2000’s by nurse activist Tosin Ola in her original blog ‘Sickle Cell Can Kiss My @ss!