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By Mary-Sara Jones, Industry Lead, Health and Human Services, IBM

Cross-program data-sharing has been one of the most popular topics at Health and Human Services conferences this year. Many states and counties are exploring different models of collaboration and integration, some focused on improving the client’s ability to engage with government, others on improving the agency’s ability to engage holistically with the client. Both approaches will be highlighted during the National Interoperability Collaborative’s upcoming “Symposium in the NIC of Time,” where IBM will be among the featured presenters.

In all cases, agencies must address the business and technical challenges relating to identity management and privacy regulations. The good news is that we are seeing success.  Although it is not rocket science, we have witnessed the level of effort wax or wane based on an agency’s approach. In all cases, the business challenges of data sharing – rather than the technical ones – tend to be more difficult.

I have compiled a brief list of key learnings gathered from successful clients that may help mitigate some of the complexity.

  • Begin by defining the business problem. Break the business problem into discrete, illustrative scenarios. They will help to identify what information needs to be shared, with whom and for what reason. Understanding the what, who and why helps to limit data-sharing to a tangible example for which legal counsel can then more clearly determine the risk. Scenarios should be detailed, identifying the actors, the actions, and the flow of data within and across agency boundaries.
  • Determine what data users need. The scenarios will guide the answer to this question. Determining what data is needed for a worker to make more-informed decisions provides the super-set, if you will, of data. This should represent the maximum data that could be available with a client’s consent.
  • Start with what can you share, not what you can’t. All systems, even the most-sensitive ones, include data that can be shared. By decoupling the data from the system, you will expand the shareable data. For example, the mental health system may include a person’s status as a veteran. Decoupling allows the status to be shared with the case manager without giving away the person’s participation in mental health programs.
  • Consent does not unlock all data. Consent makes additional data available to a worker, but not all of it. Likewise, withdrawal of consent will not remove access one has based on role. This is the base data that one would have by virtue of their position and the agency or organization for which they work. Consent represents the maximum data available to a worker. It is the super-set of what a worker needs to optimize decision-making.
  • Legal counsel is not the enemy. Once the business has defined the scenarios, it is important to work closely with legal counsel. The more legal understands the business needs, the risks and the implications, the more they will be able to support and guide you in how to proceed.
  • Drive the change from the top. There is no substitute for strong executive leadership. Most successful agencies have had a strong champion at the top who empowers the business and is unwilling to accept no as an answer.

As population demographics change, we see increasing numbers of families and individuals receiving services from multiple agencies or providers. Providing a holistic view will help reduce redundancy, improve productivity and, most importantly, achieve positive outcomes more quickly. Cross-program data-sharing can be complicated, but it is definitely possible, especially if you follow the footprints of those who have already achieved success.

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Daniel Stein is President of the Stewards of Change Institute (SOCI), a unique not-for-profit think tank and advocacy/implementation organization. He is also Co-Principal Investigator for the National Interoperability Collaborative (NIC), a new “Community of Networks” initiative led by SOCI and AcademyHealth. SOCI is built on the foundational belief that responsible, systemic information-sharing is the key to achieving enduring advancements in the health and wellness of children, adults and communities. SOCI’s mission is to improve lives by initiating, inspiring and implementing transformational change in Health and Human Services at all levels of government, industry and the nonprofit sector.

Paul Wormeli is a member of the Board of Directors of Stewards of Change Institute and is the primary author of “The Opioid Use Disorder Prevention Playbook,” which is scheduled for publication by the National Interoperability Collaborative (NIC) in several weeks.

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Comments

  • We'll be exploring these topics throughout but particularly at the Design Thinking Interactive Session on Wednesday.  The use case will be early childhood, and Bridgeport Baby Bundle. 

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