Northeast Regional Collaborative

Description of RCC Activities

Domain 1: Increase the number of providers treating individuals with sickle cell disease using the National Heart, Lung, and Blood Institute (NHLBI) Evidence-Based Management of Sickle Cell Disease Expert Panel Report

• One NY site initiated an ED QI project with the goal to have patients who go to an ED affiliated with the hospital network to have an individualized pain protocol available in the EHR system or a standardized pain protocol when no individualized protocol is available. The site is trying to reduce the reliance on ED teams to have to make decisions about patients they may not know. An extended goal is to reach additional neighborhood hospitals so that ED staff can review and use existing pain protocols. The current protocol calls for connecting patients with a community health worker to facilitate linkage to the local sickle cell center after the ED visit as well. This process has been completed at one hospital.

Domain 2: Use telementoring, telemedicine, and other provider support strategies to increase the number of providers administering evidence-based SCD care

RCC ECHO Website

RCCs found the Project ECHO® approach to be effective and manageable for knowledge-sharing. They report high use and impact of Project ECHO® and expressed desire for continued support to expand this capacity.

Using this model increased their ability to offer SCD-specific regional and national sessions. RCCs were responsible for planning, organizing, and facilitating ECHO sessions tailored to their regional needs and convening national ECHOs as needed. Content covered SCD-focused information, from basic science to psychosocial needs. ECHOs often focused on regionspecific content and cases to best support providers where they served patients. However, all RCC ECHOs were “open” and people from any geographic location within the country and world were able to attend. Some recorded the education sessions to ensure the greatest reach possible. RCCs noted that making ECHO open to all, live and recorded, was an important

About the Northeast RCC

MAP LEGEND

Regional Coordinating Center (RCC)

Clinic/Participating Site

Community-Based Organization

Lead Organization

Johns Hopkins University

Principal Investigators

• Sophie Lanzkron, MD, MHS

Co-Principal Investigator • Rosalyn Stewart, MD, MS, MBA

Co-Principal Investigator

Data Manager

• Bailey House, MPH

Participating Clinics

• CT – University of Connecticut • DE – Tova Health • District of Columbia – Howard University • MA – Boston Medical Center

service for providers in their regions for whom they were not able to educate more directly due to geographic or resource limitations. RCCs were grateful that the infrastructure for this telementoring option was established as this allowed sites to continue with virtual platforms throughout the pandemic to meet timely needs.

• Northeast ECHO website: https://www.hopkinsmedicine.org/Medicine/ sickle/

• The NE created five ECHO clinics: 1. Children’s Sickle Cell Foundation: Community-based Organizations in SCD community focused on mentorship and education 2. Jacobi Medical Center: Quality Improvement; Projects related to ED, stigma, registry implementation, and transition; teaching attendees about the QI process 3. BMC/Rhode Island Hospital: Pediatric Patient Care 4. Johns Hopkins University: Adult and Pediatric Patient Care 5. Virginia Commonwealth University: Adult Patient Care • Through these clinics, the NE offered: ɕ 276 sessions, resulting in 327 hours of education/mentoring. There were 162 separate educational sessions with 279 cases presented. ɕ Logged more than 200 hours of continuing medical education (CME) and maintenance of certification credits — both huge incentives needed to encourage providers to participate. In total, 3,372 attended, with more than 559 participants.

Additional Provider Teaching Opportunities

• Launched a recurring educational series in collaboration with Globin

Research Network for Data and Discovery (GRNDaD) called “GRNDaD

Speaks! SCD Speaker Series.” Local and international expert speakers presented basic science research in SCD. ɕ In 2020 this series completed 21 sessions with 2029 attendees. ɕ The plan is to continue this series indefinitely.

• Select site leads (from both the Northeast and Southeast RCCs) have been chosen to co-lead the American Society of Hematology-sponsored

SCD center training workshops which occurred in 2019 and will be held again in 2021. • MD – Johns Hopkins University • ME – Maine Children’s Cancer Program • NH – Dartmouth-Hitchcock Medical Center • NJ – Newark Beth Israel Medical Center • NY – Jacobi Medical Center • NY (2nd lead) – Columbia University Medical Center • PA – Children’s Hospital of Philadelphia • Puerto Rico – Universidad de Puerto Rico • RI – Rhode Island Hospital • US Virgin Islands – Virgin Islands Oncology and Hematology • VA – Virginia Commonwealth University • VT – University of Vermont Children’s Hospital • WV – Charleston Area Medical Center

Participating Community-Based Organizations

• Citizens for Quality Sickle Cell Care* (Connecticut) • Sickle Cell Association of Delaware • William E. Proudford Sickle Cell Fund, Inc. (Delaware) • Faces of Our Children (District of Columbia) • Sickle Cell Association of the National Capital Area, Inc. (DC) • Armstead-Barnhill Foundation for Sickle Cell Anemia (Maryland) • Association for the Prevention of Sickle Cell Anemia Harford and Cecil

Counties and the Eastern Shore* (Maryland) • Christopher Gipson Sickle Cell Moyamoya Foundation (Maryland) • Maryland Sickle Cell Disease Association* • William E. Proudford Sickle Cell Fund, Inc. (Maryland) • Greater Boston Sickle Cell Disease Association* (Massachusetts) • Sickle Cell Association of New Jersey* • Candice Sickle Cell Fund, Inc. (New York) • Queens Sickle Cell Advocacy Network* (New York) • Sickle Cell Awareness Foundation Corp International (New York) • Sickle Cell/Thalassemia Patients Network* (New York) • Children’s Sickle Cell Foundation Inc.* (Pennsylvania) • SCDAA – Philadelphia/Delaware Valley Chapter* (Pennsylvania) • South Central Pennsylvania Sickle Cell Council* (Pennsylvania) • Anemia Falciforme Sickle Cell Disease en Puerto Rico (Puerto Rico) • Life and Family Foundation Richmond (Virginia) • Sickle Cell Association Inc.* (Virginia) *Chapters of the SCDAA

Domain 3: Develop and implement strategies to improve access to quality care with emphasis on individual and family engagement/partnership, adolescent transitions to adult life, and care in a medical home

Improving Access to Quality Care

• To ensure each patient receives similar guideline care for both screening and follow-up, one rural site made the decision to centralize care of SCD patients to one hematologist/oncologist.

Transition Planning

• Select locations of the NY Health + Hospital System have been working to start transition care planning early. These locations are piloting a formal transition-of-care program using the Got Transition® program.

Introducing the program to patients when they turn 12, the program includes: ɕ Dedicating two of four annual visits to topics related to transition to adult care ɕ Striving to integrate the early transition planning into the hospital system by adding it to young people’s medical records

The end goal is to have the entire health system commit to this program post pilot.

Partnership with Community-Based Organizations

• A lead CBO convened local CBO leaders monthly to collaborate and work collectively. The group discussed collective work and goals. This built capacity and leadership that is needed to sustain strong regional

CBO work moving forward.

• Supported by the Program, one of the regional CBOs focused on capacity-building, collaboration, and creating space for CBO leadership.

They offered a small grants program to engage and support CBOs.

• One of the CBOs started a specific CBO ECHO.