Section 5 | Provider Support Strategies The Program’s network of RCCs is a unique national partnership that provided resources and a framework as well as a set of shared priorities. Partners in the network — providers, patients, caregivers, community-based organizations (CBOs), participating sites, Regional Coordinating Centers (RCCs), and the National Coordinating Center (NCC) — pursued a common goal to improve health and healthcare for people living with SCD. The network shared ongoing innovation, learning, and best practices.
Increasing Strength with Diverse Partnerships People living with SCD, providers, and systems often feel siloed — efforts to improve care, while potentially connected within a locale or institution, are not consistently coordinated regionally or nationally. The partnerships supported through this funding were essential in breaking down silos, both within regions and across the nation. By bringing together diverse stakeholders, the Program encouraged sites to leverage partnerships with hospital administration and pursue bi-directional state and RCC partnerships, including public health stakeholders, to improve SCD care. The network framework also developed stronger partnerships between clinical care and communities. Community-based organizations (CBOs) were formally involved in all RCCs’ networks, collaborating closely with participating sites. RCCs worked with individual advocates, community health workers, patients, their families, and caregivers as they developed and refined programs and outreach to meet the needs of people living with SCD.
Networking and Collaboration on a National Scale RCCs reported that the Program’s coordinated collaborative approach was important in highlighting areas for improvement, e.g., Transcranial Doppler (TCD) screening numbers. Collecting RCC data helped provide a national picture. During regional meetings, sites shared work areas, successes and challenges. This structure allowed for accountability of the work and fostered a sense of camaraderie, partnership, and trust that enabled RCCs to address issues together and make regional improvements.
Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program
Trainings for providers, health educators, and CBOs, such as conducting provider-to-provider education and the use of Project ECHO® telementoring programs, were employed to support collaboration. These types of activities helped the network make significant progress toward improving provider competence and confidence in the ability to care for people living with SCD.
The Need to Increase the Number of Well-Trained, Interested Providers One area of Program work was to improve provider knowledge so that more providers can take care of the SCD population. Increasing provider knowledge had the dual intent of building current provider capacity and engaging providers to become qualified clinicians for the SCD population. Current Program providers emphasized the need to build a pipeline of providers who are willing and adequately prepared to care for people living with SCD. And while both the pediatric and adult sides of care have seen shortfalls, there has been greater impact for the adult population.
That’s part of our rounding, too, when we’re working with the residents and the attendants with in-patient, we do a lot of teaching on sickle cell. Again, the focus is on trying to increase understanding of how to take care of [people with] sickle cell disease. But even with that said, patients still say, ‘There’s not enough people, not enough providers, not enough hematologists, to take care of me.’ APRN, Family Nurse Practitioner
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