Recorded presentation

David Hollar, PhD¹, Michael A. Copeland, BSIS¹, Carmen Lozzio, MD¹, Ramona Lainhart, PhD², Beth Wilson, MS, MPH¹, Teresa Blake, MS¹, and Lee Fleshood, PhD¹. (1) Department of Medical Genetics, University of Tennesee Graduate School of Medicine, Suite 435, 1930 Alcoa Highway, Knoxville, TN 37920, (865) 544-9030, dhollar@mc.utmck.edu, (2) Director of Grants and Funded Projects, Tennessee Dept. of Health Policy Planning and Assessment, 6th Floor, Cordell Hull Building, 425 Fifth Avenue North, Nashville, TN 37247

Currently, several states are developing integrated electronic child health profiles with HRSA-funded implementation grants. We present findings from the development and pilot phases of the electronic Tennessee Child Health Profile (TN-CHP).TN-CHP consists of an integrated electronic data warehouse that incorporates the following databases gathered from the Tennessee Department of Health: Newborn Metabolic Screening (NBS) and Newborn Hearing Screening (NHS), electronic and manual birth certificate records, immunization registry data, and PTBMIS. Plans are to continue further data integration. NBS and NHS records are updated daily and imported via a secure VPN from the metabolic testing center to the TN-CHP, where the data is linked with other databases using common identifiers. TN-CHP is securely accessible by health care providers who have received parental/guardian permission to access the child’s records. The database was evaluated for data accuracy, identifier linkages, and functionality prior to pilot testing. The primary goal of TN-CHP is to improve health care service delivery to children with special health care needs (e.g., metabolic conditions, developmental disabilities). Accuracy of linked client records improved with generation of client identifiers, specifically the child’s first and last names, mother’s first, last and/or maiden names, child’s birthdate, NBS unique identifier, and social security numbers. Early results from the TN-CHP pilot test, involving case managers and providers of NBS follow-up and treatment services for children with special health care needs in East Tennessee, will be discussed. Evaluation of the pilot test will lead to statewide implementation of the integrated data warehouse.

Learning Objectives: At the conclusion of the session, the participant (learner) will be able to

• Discuss the service delivery benefits of integrated data warehouses for children with special health care needs,
• Describe the infrastructure of an integrated data warehouse, and
• Evaluate the ethical and technical issues involved in linking confidential health databases.

Keywords: Children With Special Needs, Neonatal Screening

Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.

Recorded presentation