1. New Directions from the National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives (NCC) Alisha S. Keehn, MPA Project Manager, NCC/ACMG September 11, 2012 The NCC is funded by U22MC24100, awarded as a cooperative agreement between the Maternal and Child Health Bureau/Health Resources and Services Administration, Genetic Services Branch, and the American College of Medical Genetics.

2. New Funding  Project Partners and Goals  Quality Improvement  Evaluation, Evaluation, & Evaluation Updates  Communication Activities  Medical Home Workgroup & Transition Workgroup  NGECN Collaborating for the future The National Coordinating Center (NCC) for the Regional Genetic and Newborn Screening Service Collaboratives (RC)

3. New Funding, New Priorities, New Partners Cooperative agreement between GSB/MCHB/HRSA and American College of Medical Genetics (ACMG) awarded for 3 years National Genetics Education and Consumer Network (NGECN) is now part of the NCC and will be lead by Genetic Alliance. Designated funds will ensure continuation of work on effective follow-up and electronic medical record specification development for clinical genetic patient care. Structure of NCC

4. Overarching Project Goals (1) 1.Provide assistance to the RCs to achieve and provide a model of strategies facilitating their communication, partnerships, and collaborations on a local level between public health, families, pcps, and genetic medicine and other subspecialty providers; 2.Work with RCs to ensure access to quality care and appropriate genetic expertise in the context of a medical home 3.Continued development and implementation of an evaluation program 4.Developing EMR specifications for clinical genetic patient care

5. Overarching Project Goals (2) 5.Collaborating with other programs that intersect with this project 6.Supporting further development of the existing collaborative work on data sets for follow-up 7.Developing a NGECN 8.Developing a quality assessment educational program based on the learning collaborative model

6. Communication Continuing activities  NCC Collaborator (tri-annual newsletter)  Monthly NCC Notes (e-newsletter)  Inter-RC communication via monthly conference calls with all PDs, NCC, and GSB/MCHB  Quarterly webinar series with selected national partners

7. Medical Home / Transition Workgroup Workgroups will merge and assist the local RC efforts by: Clarifying the definition of the medical home and transition, Identifying and sharing promising practices among the RCs, Engaging in activities that will facilitate improved communication and linkages between genetic expertise and primary care providers, and Moving regional projects to the national level as they develop.

8. Quality Improvement, Evaluation, and the NCC Workgroups  4 NCC workgroups will focus on Quality Improvement and Evaluation: 1.Improving Access to Medical Home and Transition Services for Individuals with Genetic Conditions and their Families 2.Improving Effective Follow-Up of Children Identified with Genetic Conditions through Newborn Screening 3.Using ACT Sheets and other Clinical Decision Support (CDS) Tools to Improve Co-Management of Individuals with Genetic Conditions. 4.Improving Access to Genetic Services through Telemedicine.

9. NGECN—A Genetic Alliance Directed Activity within NCC (1) The National Genetics Education and Consumer Network (NGECN) will make a measurable impact on the lives of consumers

10. NGECN (2) Collaborate to build “advocacy-in-a- box” Expand and strengthen the network of patient-focused organizations Create a state planning guide to scale and expand consumer initiatives Fund 7 implementation demonstration projects based on the guide Educate the public through Genes in Life

11. Measuring our Impact (1)  NCC hired an Improvement Advisor and an Evaluator to help the entire NCC/RC system focus on developing evaluation measures while implementing new projects.  As the NCC’s QI and Evaluation components of each workgroup work on changing systems and practices, they will also need to identify new data sources that are becoming available through health care system changes and activities within state public health departments to develop data to inform their own program evaluations.

12. Measuring our Impact (2)  NCC and RCs should:  Develop programs that impact the indicators  Be able to measure the impact of programs/projects  Track the impact to the HP2020 measures: MeasureRC(s) BDBS-2MSGRCC BDBS-3MSGRCC DH-2MSGRCC, WSGSC DH 2-2Region 4 DH-5*NEGC, NYMAC, SERC, Heartland, MSGRCC ENT/VSL-1Heartland, MSGRCC HC/HIT-2SERC, Heartland, WSGSC HC/HIT-3NEGC, Region 4 HC/HIT-4*Heartland, WSGSC MICH 1.7Region 4 MICH-30*NEGC, NYMAC, SERC, WSGSC MICH-31*NEGC, NYMAC, SERC, Heartland, WSGSC MICH-32.2*NEGC, MYMAC, SERC, Region 4, MSGRCC MICH-32.3*NYMAC, Region 4, Heartland, MSGRCC *These measures are also proposed for the evaluation of the NCC and/or NGECN.

13. Measuring our Impact (3)  NCC and RCs should be able to report on:  How much was done  How well it was done  Whether anyone was better off

14. Thank you for 8 years of partnership. The NCC team looks forward to continuing, documenting, and reporting our great work. Thoughts, opinions, concerns? akeehn@acmg.net