SCDTDP Legislation & Funding

Transcription

1 SCDTDP Legislation & Funding In 2004, Congress enacted the American Jobs Creation Act of 2004 (P.L ); authorized a demonstration program for the prevention and treatment of SCD. Created a federal SCD program the SCD Treatment Demonstration Project

2 Funded Regional Sickle Cell Grants September 2014 August 2017 Pacific Northeast Heartland Midwest CENTER FOR COMPREHENSIVE CARE AND DIAGNOSIS OF INHERITED BLOOD DISORDER Diane J Nugent JOHNS HOPKINS UNIVERSITY Rosalyn Stewart WASHINGTON UNIVERSITY Allison A King CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER Lisa Shook

3 Regional Sickle Cell Program Create a regional network with stakeholders in multiple states using the Collective Impact model Health Resources and Services Administration

4 Collective Impact Collective impact is an approach to use collective efforts of multiple organizations to achieve improved outcomes Five conditions Common agenda Mutually Reinforcing Activities Shared Measurement System Continuous Communication Backbone Support Organization Health Resources and Services Administration

5 Overall SCDTDP Goals (1) Increase the number of providers that are treating sickle cell patients in the region (2) Increase the number of providers prescribing diseasemodifying therapies, such as hydroxyurea (3) Increase the number of sickle cell patients that are receiving care from providers with greater knowledge of how to treat sickle cell disease

6 SCDTDP Activities Use a National Coordinating Center to help disseminate strategies of the networks and provide technical assistance to the regional networks Use the Collective Impact model to create a regional network with stakeholders in multiple states Use Regional Networks to expand use of sickle cell medical home approach to care by working towards three goals Use Regional Networks to improve data collection and evaluation of program efforts

7 Regional Partnership Development Develop a network using Collective Impact strategies Coordinate efforts with the regional lead and other regional networks Assist with data collection from state partners Serve as the Technical Assistance Center for the region Health Resources and Services Administration Primary Grantee (Regional Coordinator) State Partner (State Coordinator)

8 Leadership at the State Levels Leverage resources and partnerships across each state Participate in the regional collaborative Meet the aims of the project within the 3- year time frame Contribute to achieving goals by engaging partners within each state and participate in data collection.

9 STORM Region

10 STORM State Level Partners State Project Director Lead Organization Partners Illinois Dr. Kay Saving Children s Hospital of Illinois Peoria Sickle Cell Disease Association of America, Illinois Indiana Dr. Brandon Hardesty Indiana Hemophilia and Thrombosis Center Martin Center Sickle Cell Initiative; The North Central Sickle Cell Initiative Michigan Dr. Wanda Witten-Shurney SCDAA of Michigan Michigan Dept. of Health Minnesota Dr. Stephen Nelson Children s Hospital of Minneapolis Ohio Dr. Karen Kalinyak Cincinnati Children s Hospital Medical Center Wisconsin Dr. Julie Panepinto Children s Hospital of Wisconsin Sickle Cell Disease Advocates of Minnesota Ohio Sickle Cell and Health Association Black Health Coalition of Wisconsin

11 Regional Coordinating Center Lisa Shook PI Dr. Lori Crosby Co-I Dr. Carole Lannon Co-I* Sandra Fuller QIC* *James M. Anderson Center for Health Systems Excellence

12 James M. Anderson Center for Health Systems Excellence Experience operating multi-site collaborative learning networks spanning 328 teams, 45 states, DC and 3 countries Resources include translational research, data management and infrastructure, chronic illness care, CQI and safety Expertise in health services research, health behavior, health education, quality of life assessment, reliability science, implementation and QI

13 Anderson Center Role Serve as QI consultants to the network Facilitate Learning Sessions Provide data measurement feedback Provide coaching feedback on QI projects Assist with spreading evidence-based clinical guidelines Maximize engagement of patients and families

14 MIDWEST SICKLE CELL POPULATION

15 Midwest Sickle Cell Demographics - Approximately 52 million people - Estimated 15,000 individuals with SCD in region - STORM will reach at least 90% of pediatric patients; and 50% of adult patients - At least 50% of eligible patients in each state are not consistently receiving HU Brousseau DC, Panepinto JA, Nimmer M, Hoffman RG, Am J Hematol. Jan 2010

16 Midwest Sickle Cell Challenges - Clear lack of adult providers for PCP or subspecialty care - Unclear where adults receive care - Patients may then rely on ED for care rather than a provider - Challenges with transition can lead to poor health and quality of life outcomes - Varying access to Medicaid databases across states

17 STORM Overall Goals Improve access to a continuum of high-quality, patientcentered care from knowledgeable providers Implement and spread evidence-based protocols and best practices among providers Monitor and increase the number of patients in the region receiving highly effective, disease-modifying therapies Engage patients and stakeholders to improve care Develop a technical assistance center to increase capacity of providers in the region to use data for continuous QI Create a Sickle Cell State Data Repository that includes data on the regional SCD population and measures related to access, quality and outcomes Reduce health disparities, thereby increasing health equity

18 HOW STORM PROPOSES TO ADDRESS THESE NEEDS

19 Address Needs of Midwest SCD Patients Access to Providers in Rural Areas - Develop an online educational curriculum - Create a Sickle Cell ECHO (Extension of Community Healthcare Outcomes) to connect providers and co-manage patients; share protocols; provide education/resources - Utilize QI methods to spread best practices to providers (e.g. shared decision making for HU)

20 Address Needs Cont d Additional Regional Needs Engage state level agencies (e.g. DOH, Insurance providers, etc.) to develop/support projects which improve access to care Care coordination between PCP and subspecialty care Transition from pediatric to adult care

21 Outreach to PCPs Provide CME workshops/webinars on the treatment of SCD Provide opportunity for physicians to obtain Part II Maintenance of Certification credits for participating in QI projects Use STORM website as a resource for upcoming educational events; access to evidence-based best practice guidance; access to STORM faculty for case consultations; and opportunity to be involved in QI and data projects

22 Partner with Stakeholders Engage patients, providers, family members and CBOs to incorporate local perspective and priorities into the QI work Consumer conference calls to develop discussion between providers and consumers Consumer input on projects Public STORM website to encourage consumer involvement

23 Use QI Methods Implement a regional collaborative using an adapted IHI Collaborative Model

24 Facilitate Ongoing Communication With States Virtual Learning Sessions In-Person Learning Sessions STORM address STORM website Monthly check in calls Data collection TA

25 Establish Data Repository Administrative Data Medicaid claims data Electronic medical records Local data collection project Local hospital/hematology databases Survey Data Educational Programs Data

26 ACCOMPLISHMENTS TO DATE

27 Key Accomplishments to Date Network Building Quality Improvement Regional Data Collection Patient/Family Engagement Provider Education

28 STORM Kick-Off Meeting Oct 2014 Agenda: Overview of the STORM proposal Introduction to Learning Networks Role of Patients and Families in Improvement Work State Introduction Presentations Data for Improvement Shared Decision Making Deliverables for next quarter

29 STORM Website Winter 2015

30 STORM Learning Session 1 June 2015 Physicians, coordinators, and patients/family members Agenda: Hydroxyurea educational session Design thinking session about the hydroxyurea journey for providers and patients Provider education strategic planning session Patient/family engagement planning session Data collection measures and REDCap training State storyboards (best practices)

31 STORM Fall Session October 2015 Physicians, coordinators, and patients/family members Agenda: Shared decision making and hydroxyurea Design thinking session about a provider toolkit for hydroxyurea Patient/family engagement planning session plans for patient/family tab on STORM website Race and healthcare Dr. Stephen Nelson State storyboards (best practices in network)

32 Regional Data Collection Collecting data on immunizations, HU, and ED IRB approval; REDCap database; data collection beginning in Cincinnati Medicaid claims data Received from ½ the states in our region; currently working with other states and managed care organizations to obtain data

33 QI/IHI Breakthrough Series Model Teams are using PDSAs to test and implement best practices from other states

34 Patient/Family Engagement Engaging patients, providers, family members and CBOs to incorporate local perspective and priorities into the QI work Patients/families participating in STORM Learning Session meetings Parents have been participating in other Learning Network opportunities Monthly patient/family conference calls for STORM initiatives (creating patient/family content for STORM website)

35 Provider Education Awarded a Cincinnati Center for Clinical Translational Science and Training (CTSA) Design Thinking grant to work with design team during the fall 2015 to develop a hydroxyurea toolkit for providers STORM team members interviewed as part of needs assessment STORM teams participated in a cocreation session in Oct 2015

36 Co-Creation Session

37 Co-Creation Session

38 2015 STORM Presentations Invited presenter at state conferences for Indiana and Illinois in spring 2015 Invited presenter at the Region 4 Genetics Collaborative Hemoglobinopathy Workgroup in April 2015 UC Research Week Community Engagement Award in Quality Improvement Research in May 2015 Invited panel presenter at the Sickle Cell Disease Association of America convention in September 2015

39 Medicaid Data Collection Key Measures # of providers seeing at least 2 pediatric/adult patients with SCD # of providers prescribing hydroxyurea # of pediatric/adults patients filling hydroxyurea prescription

40 Medicaid Data Collection Update Data received from Illinois and Indiana!!!! Dept of Health -IRB submitted in Michigan Discussions in Minnesota, Ohio, Wisconsin MCO s Centene and UHC pending

41 Project ECHO

42 Project ECHO Expand the capacity to provide best practice care for common and complex diseases in rural and underserved areas and to monitor outcomes. Monthly telemedicine sessions focused on provider education and not patient specific Target is any healthcare provider/team interested in SCD (primary care, hematologist) 1 hour monthly lunchtime video session (case presentations, didactic, and CMEs)

43 Project ECHO Methodology 1. Use Technology (multipoint videoconferencing and internet) to leverage scarce healthcare resources 2. Disease Management Model focused on improving outcomes and sharing best practices 3. Case based learning: Co-management of patients with specialists (learning by doing) 4. HIPAA compliant centralized database to monitor outcomes Arora S, Geppert CM, Kalishman S, et al: Acad Med Feb;82(2):

44 Project ECHO Next Steps STORM RCC team will be attending training in November Collaborate with the Anderson Center for QI, CME, and Telemedicine at CCHMC Partnership with AAP Begin creating a curriculum for 2016 Create recruiting materials for STORM region to circulate to PCPs and others Pilot Project ECHO in early 2016

45 Acknowledgements Health Resources and Services Administration National Institute for Children s Health Quality STORM Teams Patients and Families