NO. 32.  AN ACT RELATING TO A BIRTH INFORMATION NETWORK.

(S.159)

It is hereby enacted by the General Assembly of the State of Vermont:

Sec. 1.  LEGISLATIVE PURPOSE

(a)  It is the purpose of this act to:

(1)  establish a birth information network designed to identify newborns who have special medical needs which may respond to early intervention and treatment by the health care system;

(2)  identify best practices designed to prevent adverse health conditions in newborn children; and

(3)  contribute to and benefit from the pool of data relating to the causes and effects of adverse health conditions in newborn children.

(b)  The network may be used to identify, and enroll in services on a voluntary basis as desired by parents or guardians, infants whose health and welfare will benefit from early medical intervention and health and social supports.

Sec. 2.  18 V.S.A. § 5087 is added to read:

§ 5087.  ESTABLISHMENT OF BIRTH INFORMATION NETWORK

(a)  The commissioner of health shall establish a statewide birth information network designed to identify newborns who have specified health conditions which may respond to early intervention and treatment by the health care system.

(b)  The department of health is authorized to collect information for the birth information network for the purpose of preventing and controlling disease, injury, and disability.  The commissioner of health, in collaboration with appropriate partners, shall coordinate existing data systems and records to enhance the network’s comprehensiveness and effectiveness, including:

(1)  Vital records (birth, death, and fetal death certificates).

(2)  The children with special health needs database.

(3)  Newborn metabolic screening.

(4)  Universal newborn hearing screening.

(5)  The hearing outreach program.

(6)  The cancer registry.

(7)  The lead screening registry.

(8)  The immunization registry.

(9)  The special supplemental nutrition program for women, infants, and children.

(10)  The Medicaid claims database.

(11)  The hospital discharge data system.

(12)  Health records (such as discharge summaries, disease indexes, nursery logs, pediatric logs, and neonatal intensive care unit logs) from hospitals, outpatient specialty clinics, genetics clinics, and cytogenetics laboratories.

(c)  The commissioner of health shall refer to the report submitted to the general assembly by the birth information council, pursuant to section 5086 of this title, for the purpose of establishing guiding principles for the research and decision‑making necessary for the development of the birth information network.

(d)  The network shall provide information on public health activities, such as surveillance, assessment, and planning for interventions to improve the health and quality of life for Vermont’s infants and children and their families.  This information shall be used for improving health care delivery systems and outreach and referral services for families with children with special health needs and for determining measures that can be taken to prevent further medical conditions.

(e)  The network shall be designed to follow infants and children up to one year of age with the 40 medical conditions listed in the matrix developed by the birth information council which have been selected as identifiable via existing Vermont data systems and are considered to be representative of the most significant health conditions of newborns in Vermont.

(f)  The network’s data system shall be designed to coordinate with the data systems of other states so that data on out-of-state births to Vermont residents will be captured for vital records, case ascertainment, and follow-up services.  The commissioner of health is authorized to enter into interstate agreements containing the necessary conditions for information transmission.

(g)  The commissioner of health shall compile information every two years to document possible links between environmental and chemical exposure with the special health conditions of Vermont’s infants and children.

(h)  The department of health shall develop a form that contains a description of the birth information network and the purpose of the network.  The form shall include a statement that the parent or guardian of a child may contact the department of health and have his or her child’s personally identifying information removed from the network, using a process developed by the advisory committee. 

Sec. 3.  18 V.S.A. § 5088 is added to read:

§ 5088.  BIRTH INFORMATION NETWORK; CONFIDENTIALITY

(a)  The birth information network shall be designed to protect the confidentiality of the individuals and families involved.  Information from the network shall be used only in ways that reflect responsible public health protocols and practice.

(b)  The commissioner shall take measures necessary to comply with the federal “Standards for Privacy of Individually Identifiable Health Information” contained in Parts 160 and 164 of Title 45 of the Code of Federal Regulations, and any subsequent amendments, including the following:

(1)  security procedures limiting access to network data;

(2)  a confidentiality statement to be signed by staff members;

(3)  encryption of identifying information; and

(4)  use of information for research and assessment purposes.

Sec. 4.  18 V.S.A. § 5089 is added to read:

§ 5089.  ADVISORY COMMITTEE

The commissioner of health shall appoint an advisory committee to comment on the effectiveness of the birth information network and to gather information about funding opportunities.  The advisory committee shall be composed of representatives from the primary organizations involved in network data collection and use.

Sec. 5.  FUNDING

The commissioner of health shall apply for one or more grants from the Centers for Disease Control and Prevention or other funding sources to establish the birth information network.  The establishment and continued operation of the birth information network shall be contingent upon application and receipt of a grant from the Centers for Disease Control and Prevention or other funding sources.

Approved:  May 21, 2003