Optimum membership consists of at least one representative from each of the following categories: pediatric specialist relevant to each disorder screened (e.g., pediatric hematologist for hemoglobinopathies pediatric metabolic specialist for metabolic diseases such as PKU, MCAD, biotinidase deficiency and galactosemia, a pediatric endocrinologist for diseases such as congenital primary hypothyroidism) pediatrician practicing in a Kansas community family physician practicing in a Kansas community neonatologist pathologist laboratory Ph.D. or above chemist hospital representative nutritionist practicing at a Kansas metabolic clinic geneticist nurse practitioner practicing at a Kansas metabolic clinic parent or consumer representatives bioethicist others as the Council determines necessary The Council members are responsible for: Providing input on ideas and participating in discussions Reviewing and commenting on research, reports and other background information Attending quarterly meetings Recommending strategies for program improvement Voting on issues requiring a vote Providing to KDHE nominations of candidates to fill vacant member positions Sub-committees are utilized by the KACNS as deemed appropriate by the Council. include: Education, Parent/Advocacy, Program Administration, Hemoglobinopathies, Endocrine Conditions, Cystic Fibrosis, Metabolic Conditions, and Evaluation. New subcommittees are added as needed. Metabolic Formula Program Metabolic formula and treatment products are provided to some Kansas residents through the Children and Youth with Special Health Care Needs (CYSHCN) Program (4). The program is funded with state and federal MCH funds. Each application is individually reviewed, and medical and financial eligibility is determined according to established guidelines. The guidelines assure that Kansas residents of any age who have a condition identified through the newborn screening program are covered as of 7/1/08 when they meet the financial guidelines (subject to funding availability). Sound Beginnings Kansas legislation authorized mandatory newborn hearing screening in 1999. The goal is to identify congenital hearing loss in children before three months of age with appropriate intervention no later than six months of age. Statistics show that three newborns per 1,000 have some degree of permanent hearing loss. Congenital hearing loss is more common than cleft lip or Down committees
Objective/Step Priority (High, Med, Low) Action Recommended First Step (if different from Action Recommended) Current Resources Available Responsible Person or Org. Implementation Timeline (By When?) 1. Ensure an adequate workforce by promoting awareness of careers in genetics for interested individuals. High Create an Education Committee within the Kansas Genetics Advisory Council to address workforce and career development issues. Include representatives of higher education, secondary education, and business community. Committee should have broad geographic representation. Because implementing into curriculums will be difficult, start by targeting career days. Potential audiences: Middle and high school students Biology majors Nursing students First steps: Work with KSDE to identify competencies in K-12 standards related to careers in genetics. Identify instructional resources to incorporate into teaching strategies. Develop brochures, displays or resources for schools. Incorporate resources into genetics website. Work with stakeholders to disseminate information electronically to students and teachers. Establish virtual mentoring. Long-term outcome: More genetics experts / resources in the state. Kansas Department of Education Kansas Department of Commerce Kansas Postsecondary Technical Education Kansas of Regents Colleges and Universities Resources/Initiatives: National DNA Day National Society of Genetics Counselors Work with high school science educators Exposure in colleges also important Education Day at KU in Kansas City also educate general public) National Family History Day over Thanksgiving (sponsored by U.S. Surgeon General) American Society of Human Genetics: National Human Genome Research Institute: National Coalition for Health Professional Education in Genetics, Phpartners.org genomics list: http:// University of Utah Learn Genetics: Initial: Newborn Screening Advisory Council (NSAC) Once created: Kansas Genetics Advisory Council (KGAC) In collaboration with KDHE and KSDE Identify small group to work on this by Fall 2010 Materials ready for high school and junior college career days (if determined to be best method for dissemination) by Spring 2011
1.a. Increase collaboration with existing organizations, career counselors, and training grants to promote awareness of clinical, laboratory, public health and research careers, and generate support for existing and future training programs. Promote internships, clinical, job shadowing, etc. through experience-based opportunities. Identify multiple pathways to careers in genetics. Kansas Department of Health and Environment Kansas State Department of Education University of Kansas Medical Center KGAC Education Committee 1.b. Identify ways to increase career opportunities in genetics for underrepresented populations. Establish mentors in genetics for underrepresented populations. Medical geneticists and genetic counselors 2. Promote the integration of public health genomics within KDHE and other relevant state and local agencies. 2.a. Facilitate activities necessary to achieve the goals of the state genetics plan through collaboration with partner agencies,
4. Promote / enhance / improve availability of comprehensive genetics clinics throughout Kansas. High (1) Continue to develop strategies to promote genetics careers to those from Kansas/Midwest (e.g., Arkansas program), with the long-term objective of bringing them back to Kansas after they finish their training. (2) Continue to develop telemedicine system to improve outreach services. Maximize reimbursement strategies for telemedicine services. 4.a. Maintain a network of outreach genetic s clinics to undeserved geographic regions.
4.b. Identify outcome measures to demonstrate the effectiveness of genetic services. 4.c. Assure continued viability of statewide clinical services by providing supplemental financial support as needed. 5. Promote / enhance / improve availability of DNA testing for children with heritable disorders and relatives. Maximize insurance reimbursement policies to improve availability of DNA testing for children with heritable disorders and their relatives. Evaluate insurance plans to determine barriers to genetic testing, particularly blanket exclusions that prevent best-practice genetic testing. 6. Promote / enhance / improve quality of genetic laboratory testing in Kansas. High Maintain core screening based on the recommendations of ACMG and remain proficient in each of these disorders. Catalog current laboratory resources within the State. State Lab KHEL Ongoing, with annual reviews
6.a. Explore the need for and ways to enhance communication among genetic laboratory personnel to increase collaboration and maintain competencies. Med Make improvements to the current laboratory database system to minimize manual errors that with submission, analysis, reporting, and follow-up. Share laboratory resources list with partners; request updates and corrections from laboratory partners; determine potential gaps. State Lab KDHE/KHEL
Action Plan for Goal #2: Promote collaborative partnerships in support of genetic services in Kansas. This goal focuses on developing the processes and infrastructure to link patients with services for improved accessibility and availability, providers with each other for standardized care, and providers with partners and resources for dissemination of the latest information on practice guidelines and quality care. Key steps to the successful implementation of this goal include Having the Statewide Kansas Genetics Advisory Council and genetics website in place to support this Goal Identify and linking stakeholders – both professionals and organizations Evaluating the infrastructure available for connectivity stakeholders, including telemedicine, listservs, etc. and building upon that baseline Once these steps are completed, the Kansas Genetics Advisory Council will finish identifying appropriate actions for the remaining objectives in this action plan. Objective/Step Priority (High, Med, Low) Action Recommended First Step (if different from Action Recommended) Current Resources Available Responsible Person or Org. Implementation Timeline (By When?) 1. Promote collaborative partnerships between hospitals, educational institutions and health care professionals to support genetic services and education. High KDHE & Genetics Stakeholders 1.a. Identify professionals and organizations in Kansas that are interested in participating and supporting genetic services. High Survey both clinical and educational institutions. Similar survey done by KDHE in 2007. Consider updating it. 1 year
1.b. Assess interest and need for connecting clinics / organizations / institutions providing genetic services and education in Kansas. High Survey both clinical and educational institutions. None 1.c. Identify cost effective modalities for linking stakeholders. High Evaluate effective communication methods such as listserv or televideo calls. Currently no listserv exists that is specific to genetics in Kansas. 1.d. Conduct annual genetics update symposium in Kansas to update local health care professionals and educational institutions. Low Small symposium or conference annually or every two years to bring together genetics experts in Kansas. Consider partnering with AAP or AAFP. 2. Increase utilization of telegenetics for clinical and educational purposes. High 2.a. Assess telemedicine capability of hospitals and organizations participating in genetic services in Kansas. Heartland conducted a telegenetics survey in 2007 but it was incomplete / needs updating. 2.b. Survey organizations and professionals about their perception, acceptance and need for telemedicine.
1.d. Identify educational tool(s) regarding public and/or private cord blood banking for healthcare professionals. High / Med (1) Link to existing web resources. (2) Create a cord blood resource on State Genetics website. Verify CDC guidelines regarding generic banking of cord & CDC 4-year project starting 2010 National Cord Stem Cell Bank Program National Marrow Program State Genetics Coordinator KGAC 2+ years 1.e. Provide resources on continuing education courses that topics such as Genetics of Specific Conditions, Basic Genetics/101, and Ethical and Legal Issues of Genetics via self-study training manuals, interactive conveniently located one-day weekend conferences and via the established State Genetics website. Med (1) Locate conferences that provide updates on genetics through websites and webinars. (2) Provide email updates to registered clinicians through the websites. (3) Create a location where genetics updates can be posted by clinicians so that other clinicians can access. Create a place on the State Genetics website that would allow for listings of genetics courses, updates and CEU offerings. Providers are already taking genetics in their current programs of study & have to meet competencies. Updates for existing providers should be covered through 1a-d. State Genetics Coordinator KGAC 3 – 6 months Website: Begin work by August 2010 1.f. Assess nursing, PA and medical school programs for genetic content and competencies. High Provide copies of competency documents to appropriate state review boards. Send notices to schools for all programs regarding availability of genetics links and resources. Essentials documents already exist from accrediting organizations. Board of Healing Arts, Pharmacy, and Nursing 3 months
4. Expand public knowledge regarding the impact of genetics on health. Medium Develop relationships with K-12 biology educators to establish genetics competencies for high school education. Link the State Genetics website to resources available to K-12 educators through the education web access. State Genetics Coordinator KGAC KSDE 6 months – 1 year 4.a. Make information on underlying genetic causes of common chronic diseases and the importance of detection more readily available to providers, including those who care for adults with developmental disabilities of genetic origin. Medium (1) Maintain a chronic disease section on the Genetics website. (2) Develop an information system for high school educators to access genetics resources. Individual disorders have programs available. 1 – 2 years 4.b. Distribute information about services that can be provided by genetic professionals to physicians and other medical providers via circulars, program materials and on the established State Genetics website, including the process for referrals. Covered in 1.a – 1.f above.
4.g. Identify resources for information on cord blood banking for expectant parents and parents of newborns. Medium (1) Create links from State Genetics website to existing national resources. (2) Develop a state resource page for banking services that can be privately accessed. CDC information via web Private blood banking resources have established educational links State Genetics Coordinator KGAC 2 + years 5. 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. Medium Expand State Genetics website to include newborn screening; post current information, resources, and training dates (when available). State Genetics Coordinator KGAC 1 year
Objective/Step Priority (High, Med, Low) Action Recommended First Step (if different from Action Recommended) Current Resources Available Responsible Person or Org. Implementation Timeline (By When?) 1. Improve financing of genetic health care and support services. 1.a. Explore avenues for improving third party coverage and reimbursement. Provide information to insurance companies. Identify information important to insurance companies. Collect and/or compile information, including consumer perspective. Work with Kansas Insurance Department (KID) to facilitate negotiations with insurers. Involve consumers in discussions. State Genetics Coordinator Kansas Genetics Advisory Council (KGAC) Kansas Insurance Department (KID) 1.b. Identify liaisons with major third party payers and Medicaid. 1.c. Educate health insurance and providers about the value of genetic services. Work with KID to present relevant resources, best practices, and scientific advances to insurers. 1.d. Educate genetic and specialty clinic providers about the billing and reimbursement process.
1.e. Evaluate current reimbursement practices for genetic laboratory tests and establish a schedule for periodic review. Very High (1) Identify the being used for reimbursement. (2) Assist in posting for reimbursement. Survey providers 1.f. Identify new strategies for public and private funding of genetic services and related needs for individuals and families. (1) Once priorities and strategies are identified, consider hiring a grant writer. (2) Explore funding opportunities through private foundations. 2. Improve the utilization of existing data sources for planning, implementing and evaluating program activities. Compile a list of the existing data resources. with genetics providers, and ask for feedback. KDHE MCH Epidemiologists Kansas Health Data Consortium KDHE MCH Epidemiologist
3.a. Establish data linkages among genetic counselors and evaluation centers. (1) Assess and strengthen existing linkages. (2) Promote the use of uniform case standards. Survey 4. Develop and maintain systems to improve the accuracy and completeness of newborn screening data. Share information on current capacity and activities related to newborn screening data with genetics providers. Ask for their input. 4a. Establish efficient and effective linkages with vital records and other databases in order to identify health services needed or received by high- risk populations. (1) Establish memorandums of understanding with screening/intervention programs. (2) Support efforts to improve the accuracy of information collected on certificates about inherited conditions and congenital anomalies. KDHE KDHE
4b. specific health care services received by high risk populations such as infants diagnosed with metabolic disorders. (1) Promote use of single patient identifier in intervention/treatment services. (2) Strengthen working partnerships with intervention services. (3) Provide better access to resources and information to parents services that their child may be eligible in receiving. (4) Support studies to evaluate interventions and health outcomes for specific inherited conditions or birth defects. (5) Work with wellness and prevention programs to identify strategies for wellness promotion in persons with genetic conditions. KDHE KGAC
5.b. Strengthen local interest and investment in birth defects surveillance, prevention and intervention issues through connections with community health departments, community assessment advisory groups, and tribal leaders. (1) Assist in securing and long term funding for staff and activities. (2) Promote the creation of community work group to identify opportunities for incorporating genetics into existing programs and services. (3) Identify opportunities to bring genetics-related information to interested community groups (e.g., incorporating genetics information into presentations about health topics that are relevant to a particular community or population). (4) Involve community and tribal leaders in designing education and information programs that are and accessible. Other groups that may be interested include Families Together Public Libraries Medical and Academic Libraries Health Career Pathways Program at KU Med KDHE KGAC