kansas state genetics plan - an overview presented by linda williams mt(ascp) newborn screening...

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KANSAS STATE GENETICS KANSAS STATE GENETICS PLAN PLAN - AN OVERVIEW - AN OVERVIEW Presented by Linda Williams MT(ASCP) Newborn Screening Follow-up Coordinator Kansas Department of Health and Environment Our Vision - Healthy Kansans living in safe and sustainable environments

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Page 1: KANSAS STATE GENETICS PLAN - AN OVERVIEW Presented by Linda Williams MT(ASCP) Newborn Screening Follow-up Coordinator Kansas Department of Health and Environment

KANSAS STATE GENETICS KANSAS STATE GENETICS PLANPLAN- AN OVERVIEW- AN OVERVIEW

Presented by Linda Williams MT(ASCP)Newborn Screening Follow-up CoordinatorKansas Department of Health and Environment

Our Vision - Healthy Kansans living in safe and sustainable environments

Page 2: KANSAS STATE GENETICS PLAN - AN OVERVIEW Presented by Linda Williams MT(ASCP) Newborn Screening Follow-up Coordinator Kansas Department of Health and Environment

History of PlanHistory of Plan• Funded through a grant from the

Heartland Regional Genetics Center

• Initial project began in 2009

• DNAXPRT Consulting, LLC created original draft

• EnVisage Consulting, Inc. convened state experts to complete plan

Our Vision - Healthy Kansans living in safe and sustainable environments

Page 3: KANSAS STATE GENETICS PLAN - AN OVERVIEW Presented by Linda Williams MT(ASCP) Newborn Screening Follow-up Coordinator Kansas Department of Health and Environment

Plan ContentsPlan ContentsBackground on public health in KSKS demographic overviewGenetic contribution to chronic

diseases and health in KSCurrent genetics services and

resources in KS2007 State Genetics Survey resultsChallengesGoals and objectivesImplementation plan

Our Vision - Healthy Kansans living in safe and sustainable environments

Page 4: KANSAS STATE GENETICS PLAN - AN OVERVIEW Presented by Linda Williams MT(ASCP) Newborn Screening Follow-up Coordinator Kansas Department of Health and Environment

Goals and ObjectivesGoals and Objectives

Stakeholders identified four core goals at the center of the plan

At least four objectives per goal were defined

Each objective further defined with strategy statements

Our Vision - Healthy Kansans living in safe and sustainable environments

Page 5: KANSAS STATE GENETICS PLAN - AN OVERVIEW Presented by Linda Williams MT(ASCP) Newborn Screening Follow-up Coordinator Kansas Department of Health and Environment

Goal 1:Goal 1:

Improve the state’s capacity to respond to advances in genomic medicine and technology.

Objectives:• Ensure an adequate workforce by promoting awareness of

careers in genetics for interested individuals.• Promote the integration of public health genomics within KDHE

and other relevant state and local agencies.• Identify funding opportunities to increase state and local public

health capacity to respond to current and emerging technical and administrative needs relative to a comprehensive statewide genetics and newborn screening program.

Our Vision - Healthy Kansans living in safe and sustainable environments

Page 6: KANSAS STATE GENETICS PLAN - AN OVERVIEW Presented by Linda Williams MT(ASCP) Newborn Screening Follow-up Coordinator Kansas Department of Health and Environment

Goal 1:Goal 1:

Improve the state’s capacity to respond to advances in genomic medicine and technology.

Objectives (continued):• Promote / enhance / improve availability of comprehensive

genetics clinics throughout Kansas.• Promote / enhance / improve availability of DNA testing for

children with heritable disorders and their relatives.• Promote / enhance / improve quality of genetic laboratory

testing in Kansas.

Our Vision - Healthy Kansans living in safe and sustainable environments

Page 7: KANSAS STATE GENETICS PLAN - AN OVERVIEW Presented by Linda Williams MT(ASCP) Newborn Screening Follow-up Coordinator Kansas Department of Health and Environment

Goal 2:Goal 2:

Promote collaborative partnerships in support of genetic services in Kansas.

Objectives:• Promote collaborative partnerships between hospitals, educational

institutions and health care professionals to support genetic services and education.

• Increase utilization of tele-genetics for clinical and educational purposes.

• Identify and pursue use of telemedicine as a tool for improving accessibility and dissemination of information and resources.

• Promote / enhance / improve / standardize quality and availability of clinical reproductive genetics services statewide and disseminate consensus guidelines for reproductive genetic healthcare.Our Vision - Healthy Kansans living in safe and sustainable environments

Page 8: KANSAS STATE GENETICS PLAN - AN OVERVIEW Presented by Linda Williams MT(ASCP) Newborn Screening Follow-up Coordinator Kansas Department of Health and Environment

Goal 3:Goal 3:

Develop a genetics literacy agenda for the public and policymakers.

Objectives:• Expand provider knowledge regarding the impact of genetics on

health.• Develop avenues for communication about gene-environment

issues between academia, public health, primary care professionals and the public.

• Create a State Genetics webpage.• Expand public knowledge regarding the impact of genetics on

health.• Facilitate trainings for service coordinators of children with special

health care needs, consumers, and genetic health care providers to improve collaboration between agencies and families.Our Vision - Healthy Kansans living in safe and sustainable environments

Page 9: KANSAS STATE GENETICS PLAN - AN OVERVIEW Presented by Linda Williams MT(ASCP) Newborn Screening Follow-up Coordinator Kansas Department of Health and Environment

Goal 4:Goal 4:

Assess the impact of heritable conditions on public health and sustain a statewide partnership of genetic services.

Objectives:• Improve financing of genetic health care and support services.• Improve the utilization of existing data sources for planning,

implementing, and evaluating program activities.• Develop a statewide surveillance system for genetics.• Develop and maintain systems to improve the accuracy and

completeness of newborn screening data.

Our Vision - Healthy Kansans living in safe and sustainable environments

Page 10: KANSAS STATE GENETICS PLAN - AN OVERVIEW Presented by Linda Williams MT(ASCP) Newborn Screening Follow-up Coordinator Kansas Department of Health and Environment

Goal 4:Goal 4:

Assess the impact of heritable conditions on public health and sustain a statewide partnership of genetic services.

Objectives (continued):• Improve the assessment and understanding of birth defects as

a public health problem.• Develop methods to assess the public health burden of

genetic/familial disease in the adult population.• Conduct annual reviews of all genetic service components.• Create mechanisms to routinely assess evolving genetic issues.

Our Vision - Healthy Kansans living in safe and sustainable environments

Page 11: KANSAS STATE GENETICS PLAN - AN OVERVIEW Presented by Linda Williams MT(ASCP) Newborn Screening Follow-up Coordinator Kansas Department of Health and Environment

Implementation PlanImplementation PlanDetailed implementation plan

included in State Genetics Plan (pages 25-27)

Appendix B – Goal Action Plans◦Prioritized objectives◦Recommended actions◦First steps◦Resources◦Responsible person or organization◦Timeline

Our Vision - Healthy Kansans living in safe and sustainable environments

Page 12: KANSAS STATE GENETICS PLAN - AN OVERVIEW Presented by Linda Williams MT(ASCP) Newborn Screening Follow-up Coordinator Kansas Department of Health and Environment

QuestionsQuestions

Our Vision - Healthy Kansans living in safe and sustainable environments

Page 13: KANSAS STATE GENETICS PLAN - AN OVERVIEW Presented by Linda Williams MT(ASCP) Newborn Screening Follow-up Coordinator Kansas Department of Health and Environment

Contact InformationContact Information

Linda A. WilliamsSuite 2201000 SW JacksonTopeka, KS 66612

[email protected]

Our Vision - Healthy Kansans living in safe and sustainable environments