Data Collection and Sharing for Law, Policy, and Program Development

As jurisdictions work to improve practices within and between youth-serving agencies, it is critical that they use existing data and develop new data to inform their planning. These data can be used to develop laws, policies, and programs to meet the jurisdiction’s identified goals and objectives. This requires agencies to consider both what needs to be collected by each agency individually and what data needs to be brought together across agencies. The products that sites may develop for this category of data sharing include data sharing agreements, privacy protocols, access policies, data security procedures, data collection systems, proposed legislation, and training curricula.

This Tool Kit provides a summary of important issues in the collection, sharing, analysis, and understanding of data about clients served in the juvenile justice system and by other human service agencies and service providers in the community.  It is designed as a primer or overview to help get the process started—or if already started, to refine the process.

The policy and program development environment

Shaping the design, delivery and evaluation of services to children and adolescents who are served by juvenile justice agencies (and their human services partners) is a complex process, usually involving multiple constituencies and operating within a shifting environment of public opinion, uncertain resources (usually tax dollars), community values, and historical practices. Federal and state laws set some parameters for the programs and services provided, but policy makers and program managers at various levels of state and county government continue to have great latitude in responding to the perceived needs of their communities. Reliable data can be a critical element in bringing clarity to decision-making and identifying promising directions for improvement in ever-changing systems.

“Lots of data, very little information…”

Most juvenile justice systems and human service systems serving children and adolescents collect and report numerous bits of information, usually targeted to specific mandates. It is the rare system that has the capacity to aggregate and analyze its own disparate sets of data points, much less incorporate what is known about youth and their families by other systems. The combined lack of systematic analysis, data analysis, and reporting tools is often compounded by the limited technology available to many systems.  Rich repositories of information about individual youth exist in paper case files in local offices.  But this information is difficult to extract and “roll up” with other information for the purpose of analysis that can ultimately inform policy.

A case example

The net effect of what the team is trying to do might be understood best with an example. The team may know that  there are an average of 160 open juvenile court cases at any given time in  the jurisdiction; that 160 number is an ‘aggregate’—it’s a lot of numbers rolled up into one big lump sum of data. Workers report that the young people they serve seem to have more problems than in the past. But what does the team really know about that 160 young people and their problems? And are the  workers being most effectively deployed to help them succeed?  In this case, the team has a fully developed data sharing process, allowing the team to ask questions to obtain a more detailed picture of the young people.  A data services manager can, for example, extract the data and de-identify it in order to begin to conduct baseline analytics. This begins the disaggregate process of breaking down big data into manageable components.   Specifically, imagine that the team is provided the following data:

Of that 160, there are 50 young people who are receiving services from juvenile justice, child welfare, and mental health, and these 50 young people account for 40% of all out-of-home placement days for your catchment area.

The data has now provided some insight into a particular population that the team can use to design interventions specifically tailored to their needs.

Privacy and confidentiality

Significant issues arise in using information about children and families for any purpose other than a single agency’s access for purposes of individual case planning.  But the challenges to wider sharing of that data are not insurmountable, and the benefits of aggregating data for system and cross-system planning outweigh the procedural efforts that must be invested to allow the sharing to occur.  Further detail on addressing privacy concerns is included below.

Practical steps for moving ahead

The next section of the Tool Kit provides an overview of federal confidentiality laws and scenarios involving data sharing across agencies for law, policy and program development.   The scenarios ask readers to apply federal laws to the questions, and answers are provided based on federal laws.  However, readers are also encouraged to apply their own state’s laws in answering the questions.

Following the federal law overview and scenarios are the principles that should guide data collection and sharing efforts.  There is a series of concrete steps one can undertake to either start a project or refine an existing one.  Not every eventuality can be anticipated and the suggestions below will have to be adapted to each particular working environment.  However, the following steps should provide an excellent starting point.

Finally, a number of case studies are included for reference.