Recommendations Emerging From Program Work

Clinical Care

1. Leverage existing registry information and improve current EHR systems (e.g., EHR templates; order sets; tracking and feedback mechanisms).

• Data from these sources can be used to improve the care of patients with SCD as well as provide a national perspective of the patient population.

• The use of available registries, EHR templates, order sets, etc. should continue. The experience through the Program showed that there were varied outcomes in the use of these types of resources, but continuing work to improve all is recommended.

2. Monitor key processes and outcomes with a focus on achieving the high-quality, comprehensive care recommended by national guidelines, including screening and preventive interventions (e.g., penicillin prophylaxis, immunizations, HU use, transfusion, TCD screening) as well as ED visits, hospitalizations, and readmissions.

• Consideration should be given to stratifying key process and outcome measures by race/ethnicity and other relevant social determinants of health (e.g., income level, zip code, language) to assess for within and across group disparities.

• RCCs followed national guidelines; clinics that had buy-in and infrastructure to support use of these guidelines are models to replicate.

• Data tracking the use of select national guidelines was completed and are included in this report. This type of tracking requires significant staffing and resources. Disaggregation of data is important to better understand details of how care is being provided but was not in the scope of this program.

3. Expand the use of evidence-based care plans and other care coordination tools for individuals with SCD.

• Measure this process, as it will inform how to best use and optimize plans. • Emergency care and related pain management protocols and strategies were not core areas of measurement under this funding. However, several sites have prioritized these topics. Materials can be found in the

Compendium of Tools and Resources and Model Protocol sections.

4. Provide education regarding use of therapies (i.e., HU, transfusion, other disease-modifying therapies) for individuals living with SCD and their families.

• Using evidence-based shared decision-making tools that support discussions of benefits and risks, as well as patient preferences and strategies for self-management support, is beneficial.

• Clinics and CBOs completed patient education across a broad spectrum of topics. Several are included in the Compendium of Tools section.

5. Provide supports needed so that healthcare systems are equipped to provide robust care coordination for both psychosocial and medical needs of individuals living with SCD and their families.

• Healthcare teams for both the pediatric and adult populations should include social workers, mental health specialists, community health workers, occupational therapists, and similar providers to address needs, reduce fragmented care, and ensure bias is minimized and health equity maximized.

• ECHO sessions could be dedicated to each of these specialty areas for greater reach.

• The staff time needed to develop protocols and oversee implementation must be considered.

• Psychosocial areas are longstanding needs for patients with SCD and work through the Program has again confirmed this. But the critical role of mental health emerged as an under-supported and urgent priority, especially during the pandemic.

• The time needed to fully develop and implement a thoughtful and cohesive plan for all healthcare systems was not in the scope of this program but should continue to be priority moving forward.

6. Provide supports to ensure that all facilities providing care for individuals living with SCD incorporate the following six core elements of transition where appropriate:

1. Having a transition policy 2. Developing a process for tracking and monitoring transition-age youth 3. Assessing and using transition readiness assessments 4. Planning for transition 5. Transferring care 6. Completing transfers Some sites have mastered all six essential areas; others need to address some, while others must begin. Supporting teams as they work to achieve mastery across the board for strong transitional care is welcome.

7. Include individuals with SCD and families in both the design and implementation of efforts to improve care.

• Reference and incorporate existing program/initiatives as applicable (e.g., Foundation for Women and Girls with Blood Disorders; American

Academy of Pediatrics Learning Action Network efforts).

• All providers working with individuals living with SCD understand and support the emphasis on and need to engage families. Cross-learning continues to be important and using already available resources designed for this effort is worthwhile and efficient.

8. Develop and disseminate standard models and/or curriculum to improve knowledge related to SCD care for all members of the care team.

• Care team should include physicians (specialists and generalists) and advanced practice providers (nurse practitioners, physician assistants, nurses, social workers, community health outreach workers, mental health specialists, physical therapists, etc.)

• Training should begin early (undergraduate medical education and post-graduate medical education) and be an ongoing requirement for continuing medical accreditation

• Education through ECHO, other medical direct education opportunities, and conferences continued during the Program. Clinics, CBOs, and individual providers tried various routes to support improved knowledge and experienced different levels of success. • While developing detailed standard models/curriculum related to SCD care was outside the scope of this program, the Program supports ongoing work in this area.

Healthcare Policy

1. Support expanded access to evidence-based SCD care through telemedicine, telehealth, telementoring, and other innovative models for these services.

• All RCCs and some of their local sites have supported, participated in, and implemented telemedicine, telehealth, telementoring, and other innovative models for these services. These types of services became particularly important given the special needs during the pandemic. Given the duration and success of these components, the Program anticipates that continuation and expansion going forward will be important.

2. Advocate and promote improved access to digital technology and internet access for people living with SCD. This is particularly timely given the needs of people living with SCD and their families who may face barriers to accessing in-person care (e.g., due to personal circumstances or unforeseen events, such as COVID-19).

• Telemedicine, telehealth, telementoring, and other innovative models require the use of technology, both by providers and patients. Some clinicians experienced variability in their patients’ ability to participate in all electronic methods. For instance, some patients relied on pay-byminute phones and could not expend valuable minutes for a phone visit, while others did not have video capability.

• Continuing to improve access to digital technology and internet access will be important in the near and distant future.

3. Advocate for sustained and enhanced reimbursement for clinicians and complex care teams providing traditional as well as telehealth care. SCD should be automatically added as an eligible condition for enhanced reimbursement.

• Through the work RCCs conducted during the Program, they saw the need for sustained and enhanced reimbursement for team-based care.

However, pursuing change regarding reimbursement eligibility criteria was out of the scope of this program. 27

4. To strengthen quality SCD care, incorporate standardized quality measures of access and care for individuals living with SCD into organizational performance measures, such as the Bureau of Primary Healthcare quality metrics and the new American Society of Hematology guidelines for care. These measures should be tracked in existing registries.

• All providers should be encouraged and supported to employ quality metrics that align with the Centers for Medicaid and Medicare Services

Equity Plan for Improving Quality in Medicare to maximize use of these standardized measures. Adherence should be incentivized to encourage uptake.

• Harmonization and standardization of quality measures and metrics, such as put forth by trusted agencies such as the American Society of

Hematology, is essential to ensure consistent, national care.

• At this time, work from the Program shows that RCCs and their sites have a strong sense of the guidelines, but greater consistency is needed.

• Work should continue on this recommendation in future program iterations.

5. Create system infrastructure and adequate reimbursement for care transition throughout a patient’s lifespan that ensures seamless and comprehensive care.

• Strong team-based care should be employed and include a variety of providers. Care of patients living with SCD should involve both primary care and specialty clinicians. When available, specialists should be encouraged to lead and coordinate care in collaboration with their primary care colleagues. The SCD expert, medicine/pediatrics internists, and/or family practice providers should work together to meet the medical needs of the patient.

• At all times, but especially at crucial transition points, support care team members, such as social workers, care coordinators, and mental health clinicians, must be an active part of the care team.

• During the Program, many RCCs and their local clinics were focused on transitional care and grew the implementation of quality care in this area.

However, data from the Program showed continued attention is needed.

Please see the Compendium/Model Protocol for specific resources. • In addition to the focus on transitional periods of care, there is great interest and support for implementing effective care across the entire lifespan of patients with SCD as noted in this recommendation. The experience of the Program teams was that coordination of care is best led by a provider who specializes in SCD care, someone who deeply understands the disease and essential care components that must be tracked, addressed and continued through completion. In particular, providers at or affiliated with a comprehensive SCD center bring important experience and are preferred for this role when possible.

• Overall, additional structure and support is needed to address infrastructure and reimbursement barriers, which was not in the scope of this funding.

6. Support tailored training of qualified healthcare professionals who understand collaborative care models and complex care for both pediatric and adult patients with SCD.

• Students have different learning needs from licensed practitioners. And, within providers, attention should be given to determine whether APPs (NPs/PAs) need a different educational track from physicians. Exposure to evidence-based content to build knowledge and skill may be the same, but intervention strategies may be different.

• Building a pipeline of providers willing to specialize in SCD care will be important to ensure high-quality care for this HRSA-designated medically underserved population. Student loan forgiveness programs for broader categories of physicians (e.g., hematologists), nurses, nurse practitioners, and physician assistants should be considered.

• Throughout the Program, training was important and it is recommended that this be a core part of future work. Grand rounds, SCD-specific training (including biological pathways, treatments, and psychosocial needs), ECHO®-based learning, and other educational opportunities must continue. Having a national site that has links to all recordings of program ECHO® sessions would be beneficial for shared learning.

• While continuing medical training opportunities must continue, a more focused plan is required to increase the number of providers specifically trained to take care of patients living with SCD. Such a plan should include making it more financially appealing. This work fell outside of the scope of this program.

1. Continue to support a regional infrastructure for the Program.

• This approach worked well and should be maintained since it supported strong delivery of care across participating sites. • The regional infrastructure should continue to encourage funding that fosters and supports all clinics providing care for people with SCD. Variety of size and geographic location of clinics is recommended.

Collaboration with CBOs and community-based practices to enhance delivery of care is recommended.

• Within a regional infrastructure, RCCs previously used the Collective

Impact Model (CIM) effectively. The CIM promotes using common agendas, communications, data, and mutually reinforcing activities, and supports the role of the RCCs as backbone agencies of the regional structure. Resuming a CIM framework within a regional model allows for building the synergies necessary for building capacity. Reinstating the use of CIM should be considered.

• A regional approach was adopted by all regions. Further, reflecting on the breadth and depth of work accomplished during the Program, it was seen to be a cost-effective approach. The Program also recommends when using this approach, greater site/clinical/CBO coverage and appropriate resources must be provided to experience the most powerful impact, as financial limitations hampered increasing the reach, benefits, and power of a true learning collaborative.

2. Support the growth of the following monitoring and awareness areas via funding and coordination.

• Utilize the national SCD registries that already exist. Per the 2020

National Academies of Sciences, Engineering, Medicine report Addressing

Sickle Cell Disease: A Strategic Plan and Blueprint for Action, use of a national, ongoing clinical registry in conjunction with a surveillance program in order to enhance quality care in SCD is recommended.

• Increase SCT education and counseling re: inherited genetic risks.

• Coordinate national SCD surveillance with the CDC Division of Blood Disorders and other federally funded programs to maximize benefit.

• Data was a major focus of this program and RCCs and their local collected the measures reflected in the data section, but collection methods could be strengthened.

• Surveillance is needed to better measure quality and there needs to be a robust, efficient process to support this.

• All RCCs support use of registries, but capitalizing on current ones and improving coordination of these resources was not within the scope of this program.

3. Continue support for and expand the Project ECHO® model by developing standard SCD curricula and metrics of success. A primary objective of future programs should be to increase the number of providers who are knowledgeable about treating SCD.

• In addition to ECHO-based work, support telehealth efforts which have been shown to improve access to services for persons with SCD, especially those who have had difficulty accessing care previously.

• All RCCs and some of their local sites, have supported, participated in, and successfully implemented ECHO-based learning.

• RCCs would like to continue to implement and expand ECHO programs if feasible.

• Developing standard SCD curricula will be important to address in a future funding iteration, as it was not in the scope of the current program.