Florida Developmental Disabilities Council

Child Developmental Screening Initiative

September 27, 2012

Workgroup on Electronic Data Systems

Members Present: Lynn Marie Firehammer, Jeffrey Brosco, Martie Sulak, Pamela King, Greg Allerellie, and Stacy Howard

Members Not in Attendance: Mary Pavan, Sharon Carnahan, Susan LaJoie, Michael Garner, and Mike Hightower

Guest: Batya Elbaum, University of Miami

Staff Support Present: Alisa Ghazvini

Lynne Marie Firehammer opened the meeting. Jeff Brosco shared information on the data element requirements of Help Me Grow, which are at the aggregate level - how many callers, who called, where they lived, what services they requested, were they able to connect to services, why or why not - not at the individual child level.

Workgroup members discussed the complexity of data system linkages and interfaces and the importance of ‘automatic population’ between systems, so that data does not have to be entered multiple times into different systems.

Martie Sulak provided additional information about Florida SHOTS, a federally funded immunization registry. All children born in Florida are included in the registry. Children born outside of Florida are added as they receive immunizations. There is also an interface with the military that ensures information on all military families is included. At present, there is no clinical data (e.g., referrals, diagnosis) included in Florida SHOTS. Marti also noted that Florida SHOTS began as a local county health management system and then moved to a centralized web-based modular system (modular systems allow add-ons). The system has a complex set of access and permission elements (with health care providers as ‘stakeholders’ allowed to enter information and education professionals allowed to view the information), and direct secure messaging is being phased in to the system. Currently Florida SHOTS is busy, working to assume responsibility for electronic health records and the Vaccines for Children Program, and there is no interest at this time on the part of Florida SHOTS for including child screening data. Despite these barriers, members concluded that Florida SHOTS is the best fit because both immunizations and screenings are broad public health and prevention efforts, and it would be less costly to utilize an existing population-based system than building a new one.

Members discussed strategies to develop support for expansion of Florida SHOTS to include child-screening information. One recommendation was to consider seeking support from the Centers for Disease Control (CDC) and Maternal and Child Health Bureau since Florida SHOTS is a federally funded program. Members also discussed the interface that is planned between the Early Learning Information System (ELIS) and Florida SHOTS, and the possibility of using that interface to build a child-screening registry. Greg Allerellie from Florida Office of Early Learning noted that the interface would not be included in the first phase of ELIS.

Other data systems were considered. Members discussed the possibility of 211 collecting the individual child data with the use of child identifiers. Interfacing the Early Steps third-party web-based system with 211 and other data systems was also discussed.

Members also talked about proprietary restrictions regarding screening and scoring and concluded that it is important that the system is one in which screening scores are fed into the data system rather than the system ‘scoring’ a screening. The importance of data agreements was noted as well as the importance of use of unique identifiers for children, whether that identifier is the one assigned by vital statistics or a system generated number.

The data elements agreed to by the workgroup were reviewed. Members were in agreement to add home visitors to Recommendation 4.

Martie Sulak also noted that the data system used by Florida SHOTS adds other challenges. It uses a cache-based programming language, relational database. From a resource perspective, developers are hard to find because it is not a system that is widely used. It requires high levels of expertise to run, and interfaces with other systems are more difficult, adding costs to the system.

The members agreed to the following next steps:

· Develop a map or catalog of all agency data systems, i.e., who is collecting what, when, and how (Resources: Children and Youth Cabinet Data Sharing Committee Report and Straw Man Report for ELIS)

· Analyze system efficiencies, potential linkages, and system architectures

· Develop an operational plan