Bringing Together Diverse Leaders in Public Health
Senior Program Manager, CYSHCN
Title V CYSHCN Director, Special Medical Services
New Hampshire Department of Health and Human Services
Public Health Program Consultant II; Children and Youth Branch Data Manager
North Carolina Division of Public Health, Department of Health and Human Services
CDC's Act Early Ambassador to New Jersey; Family & Professional Partnership Strategist
Statewide Parent Advocacy Network (SPAN)
States have many early childhood programs, services, and data systems. Systems that bring together these multiple data sources through collection, integration, maintenance, storage, and reporting are called Early Childhood Integrated Data Systems (ECIDS). These powerful systems typically include data related to the individual child, the child's family, the classroom, the program/providers, and other services that provide comprehensive care and education for young children. To date, states have primarily integrated education data into ECIDS, including data from The Individual with Disabilities Education Act (IDEA) Part C and Part B 619 Early Intervention, Head Start/Early Head Start, state preschool, and childcare data.
While the data are useful, they do not provide a holistic picture of children, families, or the comprehensive early childhood system.
This was brought to AMCHP's State Public Health Autism Resource Center (SPHARC) as a technical assistance need. Over the course of five months, AMCHP convened a workgroup of Title V stakeholders to work on a toolkit to help address this need of data integration. Below you will find reflections from three diverse stakeholders from this workgroup: a public health data manager, a Title V CYSHCN director, and a parent leader. We hope the experiences of your fellow Title V leaders inspire you to think about the need for data integration in your program and ways to engage diverse leaders in cross-cutting initiatives.
Reflections from a Public Health Data Manager, Colleen Ehatt — North Carolina
As a Child and Youth Branch data manager, I found it great to work with other "data people" on a tool that can be used throughout the state to streamline data collection and foster collaborations. The examples or case studies in the toolkit are applicable to what we do in public health on a regular basis, so it was easy to understand the goals of the toolkit.
From my experience, it is challenging to work with people who have various knowledge sets about new software/programs, because new programs can be intimidating and sometimes people do not clearly understand their benefits. It is also challenging to work with others who do not have as much experience with data collection/reporting – for instance, people may not understand why data needs to be collected in a certain way, or may not think about what outcomes they want from data before creating surveys or collecting the data, which can lead to lacking enough data to do what you aimed to do.
Reflections from a Title V CYSHCN Director, Elizabeth Collins — New Hampshire
As a CYSHCN director, data is a critical resource for my role. The potential benefit of ECIDS is clear and the value of developing a toolkit for incorporating Title V in ECIDS seemed obvious. My only hesitation was that I work in a state that does not have an ECIDS. However, I was welcomed to the workgroup, and my questions and feedback were positively received.
The workgroup members came from varied roles, and it was very effective to understand and review the perspectives offered. The workgroup was designed to carry out its mission over a reasonable time frame, the facilitator was very knowledgeable about ECIDS, and the online meetings were well-organized. The final toolkit benefitted greatly from the variety of workgroup participants. The toolkit will be very useful for CYSHCN who are partnering with their ECIDS, as well as for others like me in future efforts to create an ECIDS.
Reflections from a Parent Leader, Deepa Srinivasavarada — New Jersey
As a family leader and the "Learn the Signs. Act Early." Ambassador to New Jersey, I know and value the importance of aligning resources and the need for collaboration across maternal and child health programs to deliver services that are coordinated, comprehensive, family-centered, and culturally competent. Hence, my leadership project as a Family Fellow for the N.J. LEND program focused on completing an environmental scan of the early childhood services/programs in New Jersey and identifying potential action areas, including data integration, to improve program management, and to maximize resource investments.
As I was gathering information for my project, I was thrilled to find out about AMCHP's efforts to create an Early Childhood Data Integration Toolkit. I contacted AMCHP staff and became a member of the workgroup. It was a wonderful experience participating in the workgroup along with some of my peers and other professionals from different backgrounds. It was very interesting to see how everyone could share their perspectives and ideas, and how they were all incorporated into the toolkit. I am so glad to have been part of this workgroup and look forward to sharing this great resource!
Through data integration, public health providers and early care and education providers are moving from compliance-driven cultures to improvement-driven cultures and coordinating services to ensure optimal health outcomes for children and families.
ECIDS, inclusive of public health data, have both short- and long-term benefits to public health programs. For example, integration not only leads to better health promotion, coordination of needed services, and earlier identification of developmental delays, but also to better planning, prevention education, and policy development, thus laying the foundation for future healthy development and school readiness. Some states integrating public health data into ECIDS can leverage efforts toward seamless care coordination, family support networking, developmental monitoring, streamlining eligibility determination, and facilitating referrals. These linkages bring together often isolated community-based programs and services by increasing communication and linking children and families to needed resources and services within the early childhood system.