Missouri Sickle Cell Disease State Action Planning Initiative
Advocacy
Action plans: August 2023
We are pleased to provide here our action plans as of August 31, 2023 for both the state of Missouri and Heartland/Southwest region including Missouri, Iowa, Nebraska, Arkansas, Louisiana, Oklahoma and Texas.
Mission
To organize a dedicated coalition of key collaborators to equip and empower Missourians about sickle cell disease and trait to improve statewide disease awareness, education, and evidence-based care delivery. Using the 10 Essential Public Health Services as our framework, we will establish work groups dedicated to improving Assessment, Assurance, and Policy Development to improve quality of life and healthcare for Missourians with sickle cell disease and trait.
Who
A coalition of key collaborators, under the leadership of the HRSA funded Heartland Southwest Sickle Cell Disease Network, will come together to establish goals and activities for sickle cell disease awareness, education, and care delivery across Missouri to develop a comprehensive and cohesive Sickle Cell Statewide Action Plan by August, 2023.
Meetings
Work groups will meet again in February or March, and the large group will reconvene in April 2024.
If you are interested in learning more about the Missouri Sickle Cell Disease State Action Planning Initiative, please email Elfaridah (Ayu) Frazier at e.p.frazier@wustl.edu.
| Work group | Updates |
|---|---|
| Assessment | The Missouri SCDC (Sickle Cell Data Collection) surveillance program has collocated a multi-disciplinary team of experts that are delegated to specific workgroups based on their background and expertise and in alignment with the workgroups defined by the CDC. We have onboarded a project manager for this program to keep track of project deadlines and timelines. Early this month CDC award reapplication and progress performance report were submitted to the CDC. As in effort in building a registry of patients with SCD and SCT in Missouri, we have reached out to the Cystic Fribrosis (CF) Foundation; their organization have successfully established several CF registries. We had an introductory meeting with the directors of the foundation a few months back and will follow-up with the CF Foundation’s administrators to reestablish communication and knowledge transfer for building a successful registry specific for SCD. We partner with MDHSS Office of Minority Health and Health Equity to launch a trait testing campaign. Ali Towerman, an SCD NP, plan to speak at MDHSS webinar in August 2024 on Trait Testing. Another activity that this workgroup has been working on is to facilitate programs at schools and to connect with existing programs to incorporate SCD education. Drs King and Harris are launching a study to identify determinants for academic support called ASK-SCD. They have started reaching out to schools and enrolling SCD patients and caregivers to complete surveys regarding their knowledge and awareness on SCD. Dr. King has also spoken at Nurse Education Webinar series and MO coordinated School Health Conference on SCD. Furthermore a “Build your Own SCD School Binder” is now available on MO Show Me School Health Website. Lastly, in collaboration with Welcome Wellness Health Education Resource Center (WWHERC), Mid-America and Sickle Cell Association of Saint Louis, we will launch a Chronic Disease Self-Management Program for adults and young adults with SCD. This is a free six-week workshop that will start on June 3rd, 2024. This workshop will be virtual via Zoom and run every Monday at 6:30pm for 2.5 hours. Participants will be asked to complete a short survey for feedback at the end of the program. |
| Assurance | For the past few months this group has focused on standardizing and identifying barriers for breakdowns in transition guidelines from pediatric to adult care. They utilized six core elements framework and adjusted it to fit this group’s objectives and needs. Each site has completed transition rating guidelines with goal to have some rough drafts in the next coming months. Self-assessments were performed at each site. In general, there was low ratings amongst multiple sites for a formal policy care and guideline for tracking and monitoring towards readiness. Higher development among sites is making the appointment and sending the appointment summary. While highest rating is making sure the transfer is completed. Each site has begun formatting their own guidelines. Some of the barriers are to find ways to reach out to the no show patients. Can the system assign CHWs to families, pediatric patients? What programs can fill the gaps around community-based hubs to connect with CHWs as well as the need of health system to partner with CHWs inside community rather than in hospitals. Another goal for this workgroup is implementing survey to determine actual number of SCD patients who have a PCP that the SCD patients regularly see other that hematologists. Based on a pooled data from the ongoing SCD registries, most of the patients do not have or visit PCP regularly. Moving forward we plan to design and build a s |
| Policy development | The current goal is on how to communicate information and to elevate voices in the Sickle Cell Community. The first goal is to create an annual reportof SCD. This workgroup has discussed the need to determine available data in state-level datasets. The cost of impact of living or caring for someone with SCD include missing days of work, inability to work, hospitalization, missing days of school. The potential value for employer/ employee health due to loss economic activity was noted. This workgroup observes the true daily impact of SCD likely seen in days taken with FMLA (for healthcare management and sick days). An annual report should include: Access to Healthcare for People with SCD: – Number of people living with SCD in MO. – Number and locations of providers. – Assessing access and disparities in specialty care. Economic Impact of SCD: – Lost days of work or school. – Ability to work for individuals with SCD or caregivers. Summary of Current State Programs: – Cost of current programs (e.g., newborn screening). – Opportunity for evidence-based interventions or programs from other states. – Emphasis on human-centered care being cost-effective and reducing burden (Heckman research). Overview of New Treatments like Gene Therapy: – Summary of new interventions. – Cost implications. – Justification for Medicaid coverage. Another goal is to work directly with education system to improve SCD awareness and support. This goal has also been covered on the assessment workgroup (please see assessment). Lastly, we initiated the planning process for a comprehensive educational webinar or teach-in, targeting athletic trainers, nurses, and coaches within school districts located in the St. Louis Metropolitan area. The focus of the event will be to provide in-depth insights into the intersection of sickle cell trait and sports. Dr. Kelly Harris will incorporate in ASK-SCD protocol. |
| Work group | Updates |
|---|---|
| Assessment | As an effort in building a multidisciplinary Sickle Cell Data Collection team and infrastructure within MO, Dr. King’s team went to CDC in Atlanta in November 2023 to attend Reverse Site Visit. Our site is paired with and will be mentored by Michigan Sickle Cell Data Collection Program. Michigan SCDC Program is led by the Susan B. Meister Child Health Evaluation and Research Center at the University of Michigan and the Michigan Department of Health and Human Services. Washington University hosted MO SCDC Program Y1 Site Visit on January 19th, 2024. Dr. Mary Hullihan, a health scientist, and the project officer for CDC attended the meeting. She gave an overview of the CDC’s program at a national level. Michigan team members also joined the meeting virtually. During the meeting, we were able to discuss and learn form our mentor about how they implemented their approach. Michigan provided great suggestions on how setting up our own surveillance systems. This group also is partnering with Welcome Wellness Health Education Resource Center and Master trainers for CDSMP, the work group team plan to launch a Chronic Disease Self-Management Program for individuals with SCD. |
| Assurance | For the past few months this group has focused on standardizing transition processes and identifying barriers and creating a standardized protocol for the each site. They utilized six core elements framework and adjusted it to fit this group’s objectives and needs. Each site has completed transition rating guidelines with goal to have some rough drafts in the next coming months. Self-assessments were performed at each site. In general, there was low ratings amongst multiple sites for a formal policy care and guideline for tracking and monitoring towards readiness. Higher development among sites is making the appointment and sending the appointment summary. While highest rating is making sure the transfer is completed. Next steps are to work on guidelines at each center before standardizing them before April. |
| Policy development | The current goal is on how to communicate information and to elevate voices in the Sickle Cell Community. The first goal is to create an annual report. Other states, such as Tennessee have made early intervention as an automatic intervention of kids with SCD from ages 0-3. Missouri is hoping to do similar annual report to support other legislation. Goal 2 is to create clear and compelling narratives describing patient population unmet needs. This group will set up meetings with individuals from the adult clinics, and collaborate with the local CBO. Third goal is to work with the education system to create a protocol. Action items are to disseminate state action plan and carry out planned activities, work group chairs will continue activities and meetings. |
About 22 collaborators across Missouri virtually met over Zoom to discuss progress on goals and planned activities of the written State Action Plan for Sickle Cell Disease.
The final State Action Plan for Missouri has been submitted to HRSA on August 31, 2023. Each work group led by their respective chair and co-chairs has met and started working on disseminating Action Plans, accomplishing goals, and planned activities.
During this Large Group Meeting, work groups shared the following key updates on partnerships, goals and activities:
| Work group | Updates |
|---|---|
| Assessment | Dr. Allison King has been awarded a grant by CDC to build surveillance system for SCD in Missouri. The next step is to build a multidisciplinary Sickle Cell Data Collection team and infrastructure within MO. Assessment work group will partner with Assurance work group to provide education to providers with a goal to improve access to and availability of trait testing and counseling. Building and enhancing partnership with Maternal Child Health Services stakeholders, WIC Supplemental Nutrition Program, MCH Services District Nurse Regional Consultants with a goal to facilitate and to improve care for SCD patients. The work group chair, Alison Towerman, will speak at MCH HUDDLE on November 9th, 2023 to provide SCD education and awareness. Partnering with KC Arthritis Center and Master trainers for CDSMP, the assessment work group team plan to launch a Chronic Disease Self-Management Program for individuals with SCD. |
| Assurance | This group has worked on grading current transition guidelines across Missouri and the next step is to transform current, rudimentary guidelines into clear, standardized protocols and policy that are SCD specific. Partnering with Dr. Molly Nelsen with purpose to increase patient and provider education (MOC), Dr. King will speak at Dr. Nelsen’s network monthly meetings. Each clinical site across Missouri continue to participate on building local registry and to work with their local IT teams to map out how to create similar registries at their institutions with standard benchmarks of care routed in evidence based guidelines for SCD. |
| Policy development | This group continues on working in creating a template for an Annual Report in Missouri and developing a template for patient narratives to be included in Annual Report, developing potential interview guides. Dr. Kelly Harris and Dr. King have launched the “ASK SCD; assessing knowledge and awareness of sickle cell disease in St. Louis school districts; development of a collaborative team” and expanding goal to include SCD trait. This program has Initiated the planning process for a comprehensive educational webinar or teach-in, targeting athletic trainers, nurses, and coaches within school districts located in the St. Louis metropolitan area. The focus of this event will be to provide in-depth insights into the intersection of sickle cell trait and sports. |
About 40 collaborators across Missouri met over Zoom to discuss progress on proposed activities and to review and finalize the written State Action Plan for Sickle Cell Disease.
The final State Action Plan for Missouri will be submitted to HRSA by August 31, 2023. Progress on activities will be tracked quarterly, and the Action Plan will be updated by August 31, 2025.
During this Large Group Meeting, work groups shared the following key updates on partnerships and activities:
| Work group | Updates |
|---|---|
| Assessment | New partnership with the State School Health Program. Discussed opportunities for group members to provide SCD specific education to school nurses via their annual conference, webinar series, and website. New partnership with Special Supplemental Nutrition Program for Women, Infants, and Children (WIC). Discussed opportunities for collaboration including referrals for infants and toddlers with SCD to a developmental delay program, sharing resources about WIC to patients with SCD, and WIC sharing resources about the SCD State Action Planning Initiative, SCD education, and SCD provider list to moms who use their services. New partnership with Orvie Prewitt, Program Coordinator for the Kansas City Regional Arthritis Center and Master Trainer for the Chronic Disease Self-Management Program. Work group plans to invite Orvie to a future work group meeting to brainstorm launching a self-management program for individuals with SCD. |
| Assurance | Each site has shared their current transition guidelines, and a document had been created to display similarities, differences, and gaps across institutions. Team members will review the comparison document to transform rudimentary guidelines into clear protocols and policies that are SCD specific and can be standardized across the state. Representatives from each clinical site will discuss plans and feasibility for implementing a survey to determine actual number of SCD patients who have a primary care provider that they regularly see. Update on provider education opportunities with Federally Qualified Health Centers. Dr. Allison King to speak at monthly meeting and coordinating with Dr. Molly Nelsen. Representatives from each clinical site to reach out to social workers to help with compiling a list of community resources to provide to SCD patients. Washington University shared crosswalk of variables in electronic medical record with goal of building local registry of patients with SCD at each clinical site across Missouri. Each site has agreed to participate and will work with their local IT teams to map out how to create similar registries at their institutions with standard benchmarks of care routed in evidence based guidelines for SCD. |
| Policy development | Reviewed Annual SCD Reports from Georgia and California and creating a template for an Annual Report in Missouri. Developing a template for patient narratives to be included in Annual Report, developing potential interview guides. Collaborative project with school districts in St. Louis to assess community knowledge and awareness of SCD proposed to launch in September with first collaborative team meeting |
About 40 collaborators convened over zoom to discuss progress on the development of a State Action Plan for SCD in Missouri. Work group chairs shared progress on proposed activities, timeline for completing activities, and partners to include.
Collaborators provided feedback on an outline for the State Action Plan, and work group chairs provided drafts of sections to include. We propose to include the following 19 priority activities to improve SCD education, awareness, and delivery of care for individuals with SCD in Missouri:
| Planned activity | Key topics addressed |
|---|---|
| Develop and implement a statewide surveillance program/Registry of individuals with SCD. | Newborn Screening Follow-up Care of Children with SCD Care of Adults with SCD |
| Build a local Registry of patients with SCD at each SCD clinic in MO. | Newborn Screening Follow-up Care of Children with SCD Care of Adults with SCD |
| Registry alerts/pushes to remind patients with SCD of upcoming appointments. | Care of Children with SCD Care of Adults with SCD |
| Design and implement a survey to determine the number of SCD patients who have a primary care provider that they regularly follow-up with | Care of Children with SCD Care of Adults with SCD |
| Collect existing transition guidelines from all SCD clinics in MO and identify similarities/differences, gaps in evidence-based structure. Standardize transition guidelines across the state. | Care of Children with SCD Care of Adults with SCD |
| Identify and utilize peer mentors who have successfully transitioned to adult care to guide transition age patients with SCD. | Care of Children with SCD Care of Adults with SCD |
| Improve care coordination by engaging community health workers, patient navigators, and coordinators from insurance and pharmaceutical companies to follow-up with transition age patients with SCD or those who become lost to care at any age | Care of children with SCD Care of adults with SCD Partnerships |
| Collect and collate existing resources for patient/community education and develop updated materials (if necessary). Disseminate patient/ community education materials at all healthcare institutions caring for individuals with SCD, and collaborate with local PCP offices, EDs, local business and churches to make resources available. | Care of Children with SCD Care of Adults with SCD Community Empowerment |
| Launch a Chronic Disease Self-Management Program for individuals with SCD/their caregivers or refer interested individuals to existing programs within the state | Care of Adults with SCD |
| Engage primary care providers and ED staff to deliver education about the importance of obtaining preventative care with a hematologist/SCD provider to decrease number of patients who become lost to care with an SCD provider. | Care of Adults with SCD Provider Education and Workforce Development |
| Launch education efforts targeting PCPs and general practitioners to increase their understanding and awareness of SCT and SCD so they can provide genetic counseling to families and advise individuals to get tested for SCT | Provider Education and Workforce Development Community Empowerment |
| Increase provider education at every training stage (specifically for non-hematologists, targeting PCPs and general care practitioners) and offer maintenance of certification and continuing medical education credits. Partner with local primary care provider organizations and FQHCs to provide SCD education and training. | Provider Education and Workforce Development Care of Children with SCD Care of Adults with SCD |
| Increase number of outreach centers/healthcare providers trained in evidence-based practices for SCD | Provider Education and Workforce Development Care of Children with SCD Care of Adults with SD |
| Organize a dedicated coalition of key collaborators within our state to form the MO SCD State Action Planning Initiative | Partnerships Care of Children with SCD Care of Adults with SCD Community Empowerment |
| Partner with local school districts in St. Louis to incorporate SCD education and awareness among school staff and students. | Partnerships Community Empowerment Care of Children with SCD |
| Engage partners within Vocational Rehab services to create an SCD specific referral/resource list. Make list available on a public platform. | Partnerships Care of Adults with SCD |
| Launch sickle cell trait testing campaigns and work with insurance providers to increase coverage for parental testing | Community Empowerment |
| Healthcare providers to encourage patients and caregivers to become involved in existing SCD support groups offered by local CBOs. | Community Empowerment Care of Children with SCD Care of Adults with SCD |
| Create an Annual Report of SCD in MO to share with legislators, policy makers, and key partners throughout state. Annual Report will include data collected from Registry/surveillance activities described above and narratives from patients. | Community Empowerment Care of Children with SCD Care of Adults with SCD |
Work groups will meet again in May and June, and the large group will reconvene in July. At that time, a full draft of the SCD State Action Plan will be circulated to all collaborators for their feedback. The final State Action Plan will be submitted to HRSA in August.
Over 50 collaborators convened over zoom to discuss progress on the development of a State Action Plan for SCD in Missouri. Work group chairs shared the following updates on their proposed goals and activities:
Assessment
| Goal | Strategy/Activity & Progress | Proposed Partners |
| 1. Create a Registry of patients with SCD and SCT in MO | Information gathering –> review existing databases and contact other foundations/organizations with successful registriesIdentify a data platform and data points to includeIdentify funding sourceDetermine how to consent/enroll | MO Department of HealthWomen, Infants, and Children (WIC program)Hospital/clinic leadersOB/GynMedicaid –> potential funding sourceCystic Fibrosis Foundation, Alzheimer’s Association, Be the Match –> successful patient registries |
| 2. Improve access to and availability of trait testing and counseling to decrease the number of babies with SCD born to unsuspecting parents | Education via pamphlets, seminars, CME events, mediaTesting campaigns for traitProvider education, particularly among PCPsIncrease insurance coverage for parental testing –> gather info about what is already covered | Collaborate with Policy Development work group; consider need for more legislative activityMO Department of Public HealthMO Newborn Screening PCPsCommunity based organizationsBlood labs –> to conduct genetic testing |
| 3. Decrease number of individuals with SCD who become lost to care (not seen a hematologist/SCD provider in the past year) | Address common barriers: insurance coverage, transportation, coverage for school/workIncrease care coordination by engaging community health workers, patient navigators, coordinators from insurance and pharmaceutical companies –> engage current support staff for their inputEducation about prevention (PCPs, ED staff)Increase number of outreach centers/healthcare providers for SCDRegistry alert/reminder pushes once Registry is developedUtilize peer mentorsPromote community based support groupsFacilitate programs at schools or connect with existing programs to incorporate SCD educationLaunch Chronic Disease Self-management Program (Stanford curriculum) for SCD –> figure out logistics and identify active facilitators | PCPsED staffCommunity health workers/patient navigatorsInsurance and pharmaceutical companiesMedicaidOB/GynHRSA –> funding agency for coverage of coordinator timeHealthy Kids Express at St. Louis Children’s HospitalSchool nurses |
Assurance
| Goal | Strategy/Activity & Progress | Proposed Partners |
| 1. Develop transition guidelines from pediatric to adult care (standard protocol per site) | St. Louis Children’s Hospital has some guidelines but needs to be written into formal policyUniversity of Missouri has guidelines they are willing to share with other sites Make transition policy specific to SCDInclude telehealth as future option | SCD providers |
| 2. Implement a survey on the actual number of SCD patients who have a PCP that they regularly see | Identify barriers/common reasons why patients are or aren’t seeing PCPs | SCD providersCoordinators |
| 3. Increase patient and provider education at every training stage | Half-day or full-day education to adult care programsIncrease non-live training formats to fit with busy clinician schedules Incorporate education into routine patient visits Shared medical visits — 6-10 pts for group education followed by individual visit –> provider at University Health has tried this out and witnessed patients bond and have increased engagement with this approach | MO Department of Health, Genetic Services |
| 4. Connect with vocational rehabilitation, adapt to needs of SCD, create a referral/resource list for centers | Compile resources available at each centerMake list of resources available on a central location online | Social workers at each SCD centerLincWorks |
| 5. Build local registry and work with Electronic Medical Record analysts to develop dashboard in patients’ medical charts | Healthy Planet — chronic care management toolMake standardized across institutions in MO | Assessment work group –> building RegistryIT analysts at each institution |
Policy Development
| Goal | Strategy/Activity & Progress | Proposed Partners |
| 1. Create an annual report on SCD in MO | Identify what data is needed by comparing data available in MO to other states (i.e. Georgia CDC report) –> investigate current registries and data reports availableDevelop a matrix of policies related to SCD in MO vs. other statesCollect comprehensive data | TBD |
| 2. Create clear and compelling narratives describing the patient population with SCD and unmet needs | Identify interventions to better support individuals with SCDIdentify patient support services | TBD |
| 3. Work directly with the education system to improve access to care and resources for children with SCD | Investigate current implementations/resources available for individuals with SCD in the education systemIncorporate educational data into annual report and narratives to highlight importance of education | TBD |
Work groups will continue to meet over the next few months to finalize goals, strategies, and activities to be included in a formal, written State Action Plan for SCD in MO. We will reconvene as a large group in April, 2023 to share progress. At this meeting, work groups will share proposed timelines for activities, progress to date, partnerships established, and drafted sections of the State Action Plan.
Individuals with SCD, family members, providers, legislators, community-based organizations, advocates, and other key collaborators were invited to attend an in-person meeting on Friday, September 9th at Washington University School of Medicine.
The meeting served as a kick-off and vision casting to initiate a year long process to develop a comprehensive and cohesive State Action Plan for Sickle Cell Disease and Trait. We envision the Action Plan to be a roadmap that will transform healthcare delivery, access to, and cost effectiveness of care for Missourians with sickle cell disease.
We had over 45 individuals attend the meeting in-person, and an additional 20 attended via zoom. Organizations represented included: Affinia Healthcare, Barnes Jewish Hospital, Behavioral Health Network of Greater St. Louis, Bureau of Genetics and Healthy Childhood, CENTENE, Christian Hospital Northeast and Northwest HealthCare, Community Health Worker Coalition, Integrated Health Network, Missouri Department of Health & Senior Services, Missouri Primary Care Association, Missouri HealthNet, Sickle Cell Association of St. Louis, St. Louis Children’s Hospital, St. Louis University, SSM Health, St. Louis County Department of Public Health, St. Louis Regional Health Commission, State of Missouri Department of Elementary and Secondary Education, TEAMHealth, University Health (Kansas City), University of Missouri Health Care (Columbia), Uriel E. Owens Sickle Cell Association of the Midwest, & Washington University School of Medicine.
During the meeting, we discussed the need for and proposed structure of a State Action Plan for SCD, heard an overview of the current state of SCD from representatives from the community, clinical care, and policy, learned about model programs across the county, and brainstormed current challenges, successes, and proposed solutions for SCD care in Missouri. We ended the day by breaking out into work groups to start the process of developing a roadmap of priorities, goals, and activities to be included in a State Action Plan for SCD in Missouri.
The 10 Essential Public Health Services Framework developed by the Public Health National Center for Innovations and the de Beaumont Foundation guided the development of our three work groups: Assessment, Assurance, and Policy Development. The proposed goals of each work group are listed below.
Assessment
- Create a Registry of patients with SCD and SCT in Missouri
- Improve access to and availability of trait testing and counseling to decrease number of babies with SCD born to unsuspecting parents
- Decrease number of individuals with SCD who become lost to care (not seen a hematologist/SCD provider in the past year)
Assurance
- Create guidelines at each SCD center to guide transition from pediatric to adult care
- Increase patient and provider education at every training stage throughout medical school
- Involve primary care providers and establish a true medical home for patients with SCD; Educate patients about the importance of primary care providers and educate primary care providers about SCD
- Connect with Vocational Rehab but adapt it to the needs of individuals with SCD
- Create a referral/resource list for centers to provide to patients with information on Vocational Rehab, primary care providers, specialists, community-based organizations, etc.
Policy Development
- Create an annual report for SCD in Missouri, utilize state aggregated data to drive policy change
- Create clear and compelling narratives from patients to describe the population with SCD, what has been working, what needs are unmet
- Work more directly with the education system to ensure all children with SCD get access to regular cognitive testing, therapy, and other psychosocial services from an early age
Work groups will continue to meet throughout the next year to refine goals and establish key activities and strategies to accomplish goals. We will meet together as a large group quarterly to share progress.