Pacific 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

Arizona

• Has created an electronic dashboard that tracks several clinical measures.

A built-in algorithm helps identify and flag immunization and TCD due dates.

Colorado

• Has done innovative pain management work by spearheading the opening of an observation unit for acute pain management. This has resulted in a decrease of 20 percent in hospital admissions. This state also opened a community clinic in June 2020, which offers chronic pain management and accepts Medicaid coverage.

Nevada

• Has conducted work in pain management. In addition to using the

Oregon guidelines, this site has continued other work, including their

H.U.G.S. (Holistic, Uncomplicated, Gratifying Support Services) program. This program is a holistic therapy program that focuses on pain management alternatives, such as meditation, massages, music therapy, etc. This site has also worked with the ED to try and reduce the amount of time people with SCD wait before receiving their first dose of pain medication.

Oregon

• Has leveraged their statewide database of vaccines that holds information for all patients born after 1990. This database allows clinicians to see all immunizations that a patient has received by date. To compliment this, the site has established a process for clinicians to look for what is due or needed and order these immunizations. This has been instrumental in helping ensure that patients receive needed vaccines at their next clinic visit.

About the Pacific RCC

Lead Organization

Center for Inherited Blood Disorders (CIBD)

MAP LEGEND

Regional Coordinating Center (RCC)

Clinic/Participating Site

Community-Based Organization

Principal Investigators

• Diane J. Nugent, MD, Center for Inherited Blood Disorders

Co-Principal Investigator • Marsha Treadwell, PhD, UCSF Benioff Children’s Hospital Oakland

Co-Principal Investigator • Elliott Vichinsky, MD, UCSF Benioff Children’s Hospital Oakland

Co-Principal Investigator

Data Managers

• Shalini Vora, MPH • Priscilla Salceda, MPH

• Has conducted significant work in the pain management field. This site has implemented institution-wide SCD pain guidelines and tracking metrics. To create these metrics, it was important that the PI include multiple disciplines for clinic buy-in. She assembled 23 champions from around the hospital, including providers in anesthesia, pain, and inpatient/ outpatient services. All team members came together to create this local pain treatment guideline. Oregon has shared these guidelines with others in the region.

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

State Plans

For the Program, RCCs developed a Regional Sickle Cell Action Plan and state-specific Sickle Cell Action Plans for funded states. The plans included 1) resources in each region and state to improve SCD care for all people with SCD in the region and 2) a description of the overall infrastructure that would address the goals and requirements listed in the FOA.

The state action plan described:

• How each state intended to develop a network of providers using evidence-based SCD care in the state • How telemedicine/telehealth strategies and other provider support would be utilized • How access to quality care would be supported • How the state intended to increase the number of individuals with SCD being treated by providers using evidence-based SCD care These plans were used to help formulate a cohesive approach to facilitate knowledge-sharing. Discussions spurred by these state plans brought forth a regional vision and strong partnerships with the RCCs that continues today. Information included may be helpful to states interested in doing similar work.

Pacific RCC State Plan

Participating Clinics

• AK – Alaska Pediatric Oncology • AZ – University of Arizona Health Sciences Center; Phoenix Children’s

Hospital • CA – Center for Inherited Blood Disorders; UCSF Benioff Children’s

Hospital, Oakland; Martin Luther King, Jr. Outpatient Center, Valley

Children’s Hospital • CO – Colorado Sickle Cell Disease Treatment and Research Center,

University of Colorado • NM – University of New Mexico • MT – Kalispell Regional Healthcare • NV – Sickle Cell Center of Nevada • OR – Oregon Health and Science University • WA – Odessa Brown Children’s Clinic, Seattle Children’s Hospital • UT – Utah Center for Bleeding and Clotting Disorders at Primary

Children’s Hospital

Participating Community-Based Organizations

• Sickle Cell Disease Foundation of California • Bridging The Gap - Adult Sickle Cell Disease Foundation of Nevada • Dreamsickle Kids Foundation (Nevada) • Sickled Not Broken Foundation of NV • Sickle Cell Foundation of Arizona • Colorado Sickle Cell Association • Sickle Cell Anemia Foundation of Oregon, Inc.

STATE PLAN LEVERAGE

In 2018, the Pacific region convened multiple stakeholders to begin the creation of a California State Action Plan. Using the SCDTDRCP FOA plan as a foundation, they sought funding from the California Department of Public Health to establish the Networking California for Sickle Cell Care Initiative. SCDF and CIBD shepherded the plan through the California State Legislature, obtaining $15 million in funding to improve care for adults throughout the state. Through CA’s new legislation, infrastructure for a sustainable network of adult care was built. Networking California for Sickle Cell Care

RCC ECHO Website

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

Using this model increased RCCs’ 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 region-specific 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 RCCs recorded the education sessions to ensure the greatest reach possible. RCCs noted that making ECHO open to all, live and recorded, was an important 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.

• Pacific ECHO website: https://pacificscd.org

The Pacific Collaborative also implemented the following topic specific ECHOs:

• CBO ECHO ɕ This CBO covered topics such as teaching other CBOs how to apply for funds

• Hemophilia (modified ECHO model) ɕ Held monthly

• Insurance issues and practice guidelines specific to the SCD population ɕ Hosted by Colorado

• Physical Therapy

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

• Pacific sites have employed a number of strategies to improve access to quality care. For example, some sites have hired dedicated social workers,

SCD health advocates, child life specialists, pediatric neuropsychologists, and child psychologists to address existing and emerging needs.

• Arizona increased support for coordination of care. This site conducts pre-visit planning with a dedicated nurse coordinator and a medical assistant who plans the SCD visits for the upcoming week so that visits with the patient are most productive.

• Washington has embedded a pediatric psychologist early in patients’ care to normalize and reduce stigma of mental health support, specifically blocking psychologist appointment time.

Transition Planning

• In partnership with the Pacific RCC, the Sickle Cell Disease Foundation has created a nine-month transition program that works to ensure that adolescents are prepared for care transition. Through interactive program activities, the CBO/clinic partnership teaches participating adolescents how to manage the essential areas of SCD. At the end, the site holds a mock clinic with the medical team to which the new adult living with SCD will transfer. The adolescents are asked to rate the providers that they encounter, and the providers rate the encounters from their medical perspective. Based on this mock clinic, a shared decision is made about whether a young adult is ready to transition.

• The Colorado site has a strong transition program managed by social workers. The program includes implementing a youth advisory board and community interactions with the physicians to whom young adults living with SCD are referred.

• The Nevada site is in the process of launching It’s T.I.M.E. (Transitioning

Into a more Mature Era). This program is designed for 18- to 25-year-olds who live with SCD and their immediate family members. Topics focus on life issues, such as finances, career options, family affairs, and education plans.

Partnership with Community-Based Organizations

• The Arizona clinical site forged a relationship with their local CBO, meeting for the first time at a Pacific RCC regional meeting. After meeting, they partnered to hold a full-day community event. The CBO took the planning lead, with the clinic providing educational support.

This event has helped connect the clinic with the community, which had never been done. This CBO/clinic relationship remains strong and a link to bring together patients, families, and caregivers.

• The Pacific region has forged a model clinic/CBO relationship showing what true partnership can look like in SCD care. The RCC worked with the Sickle Cell Disease Foundation, the first and oldest nonprofit, social service, SCD organization in the U.S. Located in Southern California, the SCDF was started by four physicians and grounded the CBO in both the community and the clinic from the start. The SCDF is part of all the regional decision-making and the RCC values SCDF’s input as a full partner. This has allowed the region to make great strides in maintaining connection with the community of people living with SCD. The Sickle

Cell Disease Foundation conducted the following select activities:

ɕ Continued two long-time camp programs: one for teens called

Camp Gibbous, and one for the younger children called Camp

Crescent Moon. The camps provide opportunities to the children and teens who attend and to people living with SCD who work as camp counselors. Sixty percent of the camp counselors, aged from 21 to 40, are people living with SCD. It is an important experience for kids to see older people who live full lives with SCD. The teen camp is for adolescents aged 15-18 years and serves about 40 kids annually. The primary purpose of the camp is to help kids grow and understand that they can live with SCD. Participants learn how to advocate for themselves. Graduates of the camp include physicians, attorneys, and other highly-educated and trained people living with SCD. Many of them say that it was the camp that pushed them to say “I can,” not “I can’t.” The camp continued during COVID-19 using a virtual platform to keep kids living with SCD and their families engaged and together.

• Created a group specifically for people 21-30 years of age. This is often a “forgotten” group of adults, as most have transitioned out of pediatric care and are working, in college, or potentially starting a family. Since they started this group, they average between 20- 30 people on their Zoom calls.