22 III. The Role of Data in Decision-Making The development of a coherent, consistent and coordinated program to prevent opioid use disorders necessitates 1) a foundation for the acquisition and 2) The use of data to help in the formulation of policy and in the provision of services to an individual. These two objectives are closely related but vary in the specifics of what data should be collected and what data should be shared across stakeholder groups. Data that will enable better decisions on how to mitigate the likelihood of developing a substance use disorder includes specific information about the at-risk individuals, including their early life experiences and environmental factors. For example, the initial decision of whether to prescribe an opioid for pain management should be informed by individual history and proclivity toward addiction. Access to such detailed, personal information is clearly critical for physicians. However, to formulate policy and programs, particularly in the realm of population health, decision-makers need aggregate data that helps define the extent of the problem and the possible factors that have created it. A key principle in the acquisition of useful data is that it must support the measurement of how well individual programs or projects or policies are achieving their objectives. The metrics themselves are significant, as we have seen in the importance of measuring outcomes, not just outputs, of a particular strategy or program. There is a proven methodology for addressing the issue of what data to share and how to share it. In the work of the Standards Coordinating Council, empowered by the Program Manager of the Information Sharing Environment (ISE) created by Congress, the IJIS Institute created a playbook expressly to provide detailed advice for building an information-sharing environment. a. Information-Sharing Requirements across Disciplines The starting point for defining information-sharing requirements is an analysis of the scenarios that reveal the needs for data to promote better decision-making. As illustrated in the section above, tracing the decision-making path that a person follows through various phases of treatment and service is a strong framework for uncovering the specific data that is required. This analysis is defined and described as a “play” on the Standards Coordinating Council website. Once the requirements of decision-makers and service providers are identified, a sometimes-difficult discussion needs to take place about how organizations can and will share sensitive information beyond their own borders. A major, early impediment to doing so is a concern for privacy and civil liberties, which must be addressed to meet legal and regulatory constraints, as well as individual agency policies. This issue is critical to the sharing of personally identifying data, which is essential for making information available for a variety of service providers engaged in preventative measures. A common process of managing consents is often a fundamental part of successful information-sharing. Policies and technical considerations for safeguarding data are also critical. A useful resource on confidentiality and privacy relating to information-sharing efforts is a NIC webinar in which several subject-matter experts provide important insights on the topic. In addition, the NIC Collaboration Hub includes a Confidentiality and Privacy Group, where members share resources and engage in discussions on relevant issues. The NIC Hub also includes an Opioid Group. Significant programs that have addressed and resolved these issues include: • New York City’s HHS Connect, a domain-based HHS information-sharing network • San Diego’s Health Connect program, which brings together patients and doctors • Allegheny County (PA)’s long-established Data Sharing for Health program • Montgomery County (MD)’s Healthy Montgomery, which consolidates data across agencies b. Evidence of Program Success Each of the plays in this document has specific (and hopefully measurable) objectives associated with it, either inherently or defined by the community selecting that strategy for implementation as a part of its prevention effort. The sustainability of whatever program or strategy is adopted will be determined by the extent to which data is collected to show that its objectives have been or are being met. While overall goals may be less specific about time frames, quantifiable objectives are most useful when a particular measure is expressed with a time frame in which it will be achieved; e.g., reduce opioid prescriptions by 10 percent in one year.