Sustainability Considerations for Health Research and Analytic Data Infrastructures

INTRODUCTION: The United States has made recent large investments in creating data infrastructures to support the important goals of patient-centered outcomes research (PCOR) and comparative effectiveness research (CER), with still more investment planned. These initial investments, while critical to the creation of the infrastructures, are not expected to sustain them much beyond the initial development. To provide the maximum benefit, the infrastructures need to be sustained through innovative financing models while providing value to PCOR and CER researchers. SUSTAINABILITY FACTORS: Based on our experience with creating flexible sustainability strategies (i.e., strategies that are adaptive to the different characteristics and opportunities of a resource or infrastructure), we define specific factors that are important considerations in developing a sustainability strategy. These factors include assets, expansion, complexity, and stakeholders. Each factor is described, with examples of how it is applied. These factors are dimensions of variation in different resources, to which a sustainability strategy should adapt. SUMMARY OBSERVATIONS: We also identify specific important considerations for maintaining an infrastructure, so that the long-term intended benefits can be realized. These observations are presented as lessons learned, to be applied to other sustainability efforts. We define the lessons learned, relating them to the defined sustainability factors as interactions between factors. CONCLUSION AND NEXT STEPS: Using perspectives and experiences from a diverse group of experts, we define broad characteristics of sustainability strategies and important observations, which can vary for different projects. Other descriptions of adaptive, flexible, and successful models of collaboration between stakeholders and data infrastructures can expand this framework by identifying other factors for sustainability, and give more concrete directions on how sustainability can be best achieved.