1. CHILD HEALTH PROFILE FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS AAP Annual Meeting Council on Clinical Information Technology-October 28,2007 Carmen B. Lozzio, MD, FACMG Brent Shelton, PhD Rosalyn Lemak MPH, Billy R Hancock, Billy R Hancock, Robert Eubanks, MS and Michelle Liao, MS University of Tennessee-Graduate School of Medicine, Knoxville, TN University of Tennessee-Graduate School of Medicine, Knoxville, TN Department of Medical Genetics, Univ. of Tennessee, Graduate School of Medicine, Knoxville, TN

2. Disclosures for Carmen B. Lozzio, MD, FACMG A.“I have no relevant financial relationships with the manufacturers (s) of any commercial products (s) and/or provider of commercial services discussed in this CME activity.” B.I do not intend to discuss an unapproved/investigative use of a commercial product/device in my presentation

3. GOALS OF THE PROJECT Improve quality of health care for CSHCN by summarizing all relevant information in an electronic health record called TN Child Health Profile (TN-CHP) Improve quality of health care for CSHCN by summarizing all relevant information in an electronic health record called TN Child Health Profile (TN-CHP) Expand HIT by linking public health databases with genetic, developmental and educational data on each child Expand HIT by linking public health databases with genetic, developmental and educational data on each child Make available to providers and parents/legal guardians a secure, web based TN-CHP Make available to providers and parents/legal guardians a secure, web based TN-CHP

4. The Tennessee Child Health Profile (TN-CHP) is a web- based e-health record that condenses the highlights of each child’s medical diagnosis, special needs, and recent services and evaluations into a concise, easy-to-read summary, so that authorized providers can quickly determine appropriate next steps. In addition, parents who opt to have their children included in the system will be able to view their children’s profiles online. The Tennessee Child Health Profile (TN-CHP) is a web- based e-health record that condenses the highlights of each child’s medical diagnosis, special needs, and recent services and evaluations into a concise, easy-to-read summary, so that authorized providers can quickly determine appropriate next steps. In addition, parents who opt to have their children included in the system will be able to view their children’s profiles online.

5. TN-CHP GOALS: Improve health care delivery, coordination of services, continuity of care and timeliness of follow-up Improve health care delivery, coordination of services, continuity of care and timeliness of follow-up Provide comprehensive medical, Provide comprehensive medical, developmental and case management data from a single secure website Allow long term tracking and avoid “lost” cases Allow long term tracking and avoid “lost” cases

6. Participating Institutions UT Graduate School of Medicine-Knoxville, Department of Medical Genetics UT Graduate School of Medicine-Knoxville, Department of Medical Genetics Memorial Hospital/UHS, Department of Information Service, Knoxville Memorial Hospital/UHS, Department of Information Service, Knoxville Vanderbilt University Department of Pediatrics -Genetic Center, Center for Child Development Vanderbilt University Department of Pediatrics -Genetic Center, Center for Child Development UT Health Sciences Center (Memphis) UT Health Sciences Center (Memphis) Boling Center for Developmental Disabilities and Genetic Center

7. Additional Collaborations Tennessee Department of Health Tennessee Department of Health Vanderbilt e-Health Initiative Vanderbilt e-Health Initiative HRSA- Regional Grant: SERGG HRSA- Regional Grant: SERGG Connections Community of Practice- Public Health Informatics Institute Connections Community of Practice- Public Health Informatics Institute AHRQ-Resource Center AHRQ-Resource Center

8. TN-CHP Pilot Phase in East TN

9. Statewide implementation of Tennessee Child Health Profile (TN-CHP)

10. TN-CHP AHRQ Grant for Children with Special Healthcare Needs TN-CHP Disorders Detected by Newborn Screening (NBS) Genetic Disorders Detected by Genetic Centers Hearing Loss Confirmed after NHS Developmental Disabilities Diagnosed by Child Development Centers Other Databases Acute Care Hospital Child Development Centers Pediatricians Parent Control Secure Web Volunteerr e-Health Initiative Genetic Centers Local Health Departments TN-CHILD HEALTH PROFILE

11. Ultimate Proposed Data Linkage/Sharing Scheme Ultimate Proposed Data Linkage/Sharing Scheme

12. Tennessee Child Health Profile (TN-CHP) DEMO website

15. Identifiers to search NBS/NHS data TDH number TDH number Mother Social Security number Mother Social Security number Mother last and first name, date of birth and county of birth Mother last and first name, date of birth and county of birth

22. Short Term Follow-up of presumptive positive results A summary of evaluations and diagnostic tests performed at the comprehensive genetic metabolic centers, sickle cell centers or pediatric endocrinologists is shown by clicking on the box : Confirmatory Test

23. Click on Confirmatory Test Click on Confirmatory Test

26. Link Diagnosis to Resources For MCAD the following resources are linked to this diagnosis http://ghr.nlm.nih.gov/condition =mediumchainacylcoenzymeadehydrog enasedeficiency =mediumchainacylcoenzymeadehydrog enasedeficiency http://www.savebabies.org/disease descriptions/mcad.php

27. Example of abnormal newborn hearing screening results After state report go to search page and click on Hearing Follow-up (interactive page for provider to record reports)

35. For educational information on Hearing Loss Go to home page and click on Newborn Hearing Screening

42. For information on long term follow-up of confirmed diagnosis Go to Home page and click on Child Data Child Data (this information requires parental consent)

54. Short and medium term outcomes Confirmed diagnosis is established and treatment is started as soon as possible Confirmed diagnosis is established and treatment is started as soon as possible Infants with confirmed diagnosis are followed and treated by the appropriate specialist based on the diagnosis (metabolic geneticist, hematologist or endocrinologist) and follow-up information is reported back to the primary care physician and to the other specialists involved in the care of the child. Infants with confirmed diagnosis are followed and treated by the appropriate specialist based on the diagnosis (metabolic geneticist, hematologist or endocrinologist) and follow-up information is reported back to the primary care physician and to the other specialists involved in the care of the child. Infants with confirmed diagnosis have a medical home that coordinates care with the specialists and with other resources in the community beginning as soon as possible within the first year of life. Infants with confirmed diagnosis have a medical home that coordinates care with the specialists and with other resources in the community beginning as soon as possible within the first year of life.

55. Long term outcomes Children have received consistent treatment and monitoring of the diagnosed condition and show medical signs of compliance with the treatment. Children have received consistent treatment and monitoring of the diagnosed condition and show medical signs of compliance with the treatment. Prevention of developmental delay and behavioral problems by appropriate treatment measured by psychological and behavioral assessments. Prevention of developmental delay and behavioral problems by appropriate treatment measured by psychological and behavioral assessments. Reduction of known complications such as sepsis or pain crisis in conditions such as sickle cell disease Reduction of known complications such as sepsis or pain crisis in conditions such as sickle cell disease Children with confirmed diagnosed have a consistent medical home and receive early intervention services as needed and are transitioned to educational services as needed. Children with confirmed diagnosed have a consistent medical home and receive early intervention services as needed and are transitioned to educational services as needed.

56. FUTURE PLANS Offer electronic reporting of NBS and NHS to all physicians and other health care providers registered with the state. Offer electronic reporting of NBS and NHS to all physicians and other health care providers registered with the state. Collaborate and coordinate services with all information exchange programs in the state. Collaborate and coordinate services with all information exchange programs in the state. Link TN-CHP to other TDH databases such as Birth Certificates and other Vital Records, Immunizations, WIC, and lead screening Link TN-CHP to other TDH databases such as Birth Certificates and other Vital Records, Immunizations, WIC, and lead screening Link to other databases: Early Intervention Services, TN Care, BC/BS Share Health Link to other databases: Early Intervention Services, TN Care, BC/BS Share Health

57. Acknowledgments Project Partners Project Partners Members of the Statewide Genetics Coordinating Committee Members of the Statewide Genetics Coordinating Committee Staff at the Tennessee Departments of Health Staff at the Tennessee Departments of Health Support: Support: HRSA grant U34MC00230-04 AHRQ grants P20HS015426-01 and 1-UC1-HS016133-03 and 1-UC1-HS016133-03

58. Contact Information Carmen B Lozzio, M.D. FACMG Program Director of TN-CHP clozzio@utmck.edu Phone: (865) 544-9031