Initially, ED and inpatient providers were skeptical about the need for integrating specialized SCD care into their routine practices. In response, the VCU team compiled a compelling case using hospital admissions data to show SCD as a top reason for hospitalizations and emphasized the potential financial benefits of a specialized care program. Drawing from evidence from other chronic conditions, they showcased how targeted SCD care could lead to lower readmission rates and healthcare costs.

Identifying early advocates, including Dr. Smith, within the healthcare system’s leadership proved instrumental in securing the buy-in needed to drive the program forward with the right momentum and resources. Involving these key advocates and stakeholders from the outset ensures alignment of goals, a clear understanding of the initiative, and fosters a sense of ownership that leads to active program promotion.

VCU launched a pilot program targeting the highest ED utilizers among patients with SCD, a decision dictated by both strategy and the constraints of limited funding and resources. The program's design, which focused on potential for significant health outcomes and cost savings, demonstrated cost savings of $333,000 in patient care costs over six months.⁶

Encouraged by these results, VCU invested $1 million to broaden the program's scope to include 50 additional high-utilization patients. Capitalizing on the pilot program's momentum, VCU expanded its reach, demonstrating that a larger patient base could benefit even more from the program's approach.

The program’s success began to attract national attention, bolstering its case for further support. Through workshops with the American Society for Hematology, along with other advocacy efforts, the program influenced broader educational initiatives and became a benchmark for data-driven healthcare improvement. By 2024, the continued expansion of VCU’s Adult Sickle Cell Medical Home Program affirmed its ongoing dedication to enhancing the quality of care for patients with SCD.

VCU’s Adult Sickle Cell Medical Home Program is grounded in three fundamental components: create trusting patient-provider relationships to ensure patient engagement, center a community health worker in the core leadership team, and establish SCD-specific standardized care protocols and order sets for adult patients in the electronic health record (EHR). These strategies were integral in improving the inpatient to outpatient transition of care for patients with SCD.

Recognizing the importance of trust in effectively managing the transition from inpatient to outpatient care, VCU matched the 50 highest utilizer patients with a patient navigator. This provided a consistent point of contact, offering stability and informed support throughout the patient's healthcare journey, from initial hospitalization to continuous outpatient care. These patient navigators established strong, trusting relationships by personally connecting with patients. For example, navigators have taken patients grocery and clothing shopping, invited them over for Saturday tea, and even responded to phone calls of patients at 3 a.m. on their way to the ED.^1,7

VCU also helped patients create adaptable treatment plans to address their changing health requirements. These plans went beyond medication and confronted any potential obstacles to care, including social drivers, memory issues, or the need for regular reminders. Involving patients in the decision-making process boosted their sense of autonomy and confidence in managing their disease. Additionally, VCU provided supportive resources, such as monthly support groups, which created a caring environment where patients could share their experiences and find encouragement.

• Assigning the 50 highest utilizer patients to a patient navigator who remains involved across all stages of care, from hospital admission to post-discharge follow-up. This continuity ensures that patients have a stable point of contact who is familiar with their health journey and personal circumstances.
• Training patient navigators to develop deep, holistic understandings of their patients, including their medical history, social environment, and individual challenges. This comprehensive knowledge allows for personalized care that addresses more than just medical needs.
• Implementing a communication strategy that encourages regular, open dialogue between patients and their assigned patient navigators. This should include proactive outreach to patients, ensuring they understand their treatment plans, and providing support for medication adherence and appointment scheduling.
• Empowering patients by involving them in the development and ongoing refinement of their treatment plans. Engaged patients who feel a sense of ownership over their health outcomes are more likely to adhere to care recommendations.
• Connecting patients with resources that reinforce their self-management abilities, such as educational materials, support groups, and tools for self-monitoring. These resources should be tailored to address barriers related to social drivers of health, such as transportation, financial constraints, and health literacy.

VCU’s program is grounded in a biopsychosocial model of care, which considers the biological, psychological, and social factors essential to patient health.^1,7 The key to its success is the formation of a care delivery team solely dedicated to patients with SCD, led by a program manager trained in social work.

In addition to a program manager, the care delivery team includes nurse practitioners, clinical social workers, and patient navigators who serve as primary points of contact for patients. Together, they provide comprehensive case management and coordinate closely with SCD providers to deliver holistic care. Meanwhile, an oversight team led by the senior program manager oversees the program's operations, focusing on smooth execution and enhancements through quality improvement initiatives, patient assessments, and analyses of data-driven outcomes.

^* See endnote 8

• Ensuring each team includes a community health worker, a social worker, and a clinical social worker, supported by a multidisciplinary care team of hematologists, nurses, pain specialists, psychologists, and patient advocates. Establish clear roles and responsibilities that leverage the unique skills of each team member, promoting a holistic approach to care.
• Facilitating regular communication and collaborative planning among team members to develop a unified approach to care. For example, VCU implemented daily morning huddles and ongoing team chats to ensure consistent communication and teamwork within their SCD program's care teams.
• Prioritizing continuous education and training for the team on the latest SCD treatments, patient engagement strategies, and best practices in transitional care.
• Advocating for the inclusion of patients and their families in the care team, recognizing their insights as essential to tailoring the program to meet patient needs effectively.

VCU developed standardized protocols for SCD management to provide consistency, quality, and safety across the entire care continuum. First, VCU identified areas for improvement. After examining established guidelines and expert recommendations, they identified and addressed gaps in their care model, including discharge planning. They shifted towards reliable resources and created an inpatient care protocol based on their findings, moving away from inconsistent patient assistance programs and support groups.

One of the pivotal elements of their inpatient care protocol is the inclusion of in-hospital consultations by a SCD nurse practitioner. This step was crucial, as SCD management is often in the hands of hospitalists, who may lack SCD training. Ensuring follow-up after hospital discharge was also a significant concern, as a lack of coordination often resulted in patients returning to the ED due to medication issues.

VCU also constructed a suite of order sets and treatment protocols tailored to various stages of the patient's journey, from the ED through to ongoing follow-ups after discharge. For example, they standardized their approach to pain management to include having a single opioid prescriber to maintain controlled medication management for patients. These protocols are categorized based on specific patient needs, such as whether the patient is new, requires an annual exam, is transitioning into adult care, or is considered a high utilizer of services.

• Begin by reviewing established guidelines and evidence-based recommendations to identify areas for improvement in the care of SCD patients. This process should involve identifying and addressing gaps in care, such as discharge planning, and integrating resources that are practical and effective for the specific population served.
• Develop comprehensive order sets and treatment protocols that span the entire patient journey, from the ED to outpatient care. VCU's protocols categorize patients based on factors such as recent admissions, opioid management, transition age, and utilization patterns, allowing for personalized care strategies.
• Maintain a regular cadence for assessing key quality metrics and care protocols. Employing criteria to evaluate patient engagement enables the team to proactively address areas in need of attention.

¹ Note: Unless otherwise specified, all information in this case study came from Advisory Board interviews with contacts from VCU Health.

² Note: SCD patients require care from a dedicated SCD provider and, as a result, the care they require from dedicated medical centers will not change. Therefore, the patient and the medical center need to continue to be committed to that care and the medical center cannot escape the commitment they need to provide to patients living with SCD, making them ‘inescapable.’

³ Sickle Cell Disease Adult Medical Home Annual Report 2018. VCU Health. Accessed October 1, 2024.

⁴ Yusuf HR, et al. Emergency Department Visits Made by Patients with Sickle Cell Disease. Am J Prev Med. July 31, 2015.

⁵ Mann C. CMCS Informational Bulletin. Targeting Medicaid Super-Utilizers to Decrease Costs and Improve Quality. The Center for Medicaid and CHIP Services. July 24, 2013.

⁶ Sickle Cell Disease Adult Medical Home Annual Report 2019. VCU Health. Accessed October 1, 2024.

⁷ Sickle Cell Disease Adult Medical Home Annual Report 2020-2022. VCU Health. Accessed October 1, 2024.

⁸ Note: Other organizations may refer to these roles as community health workers. At VCU, these professionals are designated as “patient navigators.”

⁹ Kanter J, et al. Building access to care in adult sickle cell disease: defining models of care, essential components, and economic aspects. Blood Adv. August 25, 2020.