In our introductory post for the topic of data privacy we noted the weight and speed of technological change combining for a new kind of pressure on organizations. To that we can add the pressure that is also on (or should be on) the regulatory environment to keep up. Youth Villages CEO, Patrick W. Lawler, deals with each of these themes and makes the case for removing technological and regulatory barriers to greater interconnectivity of data. What’s at stake? In this case, providing continuity of care for children. But, regardless of your organizational mission, this is a question that will be raised frequently as we attempt to reconcile to new standards for data sharing and privacy. What do you think?
In 1986, when I first began this work, keeping our children’s records private and confidential wasn’t such a hard thing. We helped a handful of kids with a few staff and locked our hard charts away in a filing cabinet. There were no smart phones, flash drives or HIPAA.
Today at Youth Villages, more than 20,000 children annually are helped by more than 2,600 employees, working from 63 offices in 11 states and the District of Columbia. Youth Villages built a sophisticated IT infrastructure, powered by more than $13 million in grants of software and technology from Microsoft. Every day, our staff enters admission information, updates treatment plans, records counseling notes, and enters follow-up surveys in our electronic system. The resulting integrated demographic, clinical and outcome data provide a wealth of information for program development and improvement.
Keeping our data safe and protecting the privacy of our children and families are organizational priorities. However, children’s outcomes will be improved if we can safely and securely share this information with other providers and state agencies involved with their treatment. Continuity of care is dependent upon a shared understanding of a child’s strengths and challenges, treatment history and plans for addressing the child’s issues. Such an understanding is much easier to achieve across all systems when interconnectivity links data from all the relevant sources.
One of the most significant barriers to such interconnectivity is, unfortunately, the system used by state child welfare departments, known as State Automated Child Welfare Information System (SACWIS.) Funded primarily by the federal government, nearly all states have or are in the process of implementing a SACWIS system; with federal funding comes regulations for all aspects of the system, including data security. Interconnectivity between private provider data systems and SACWIS systems is nearly impossible, as regulations prohibit uploading of information from external systems. Although this probably made sense when requirements were drafted more than a decade ago, advances in technology have rendered this regulation nothing more than an obstacle to continuity of care. We know that such interconnectivity can work, as we currently upload data directly into the Mississippi child welfare database system, which is not SACWIS. Mississippi state agency staff have access to up-to-date information on each youth’s care, which makes our work with them open and transparent and allows for more collaboration and coordination.
Most other states we serve, including Florida and Tennessee, have SACWIS-compliant systems that prohibit such direct information sharing. To meet their data requirements, we hire employees who spend all day, every day, retyping information from our system into theirs. Improved interconnectivity would not only reduce the number of employees handling sensitive personal health information, but eliminate errors that inevitably occur in the data re-entry process.
Youth Villages has long been at the forefront of using technology to improve behavioral health services for children and families. Increasing interconnectivity, especially with state data systems, will allow us to continue to focus on helping children and families succeed.