SUPREME-DM: Sustaining a Learning Research Network

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DESCRIPTION (provided by applicant): The SUrveillance, PREvention, and ManagEment of Diabetes Mellitus (SUPREME-DM) Network's DataLink contains extensive clinical and administrative information on 1.1 million individuals with diabetes who received care in 11 integrated delivery systems between 2005-2012. The current application proposes a strategy to sustain this national scientific resource and further expand its data infrastructure and scientific capacity. It places individuals with diabetes and the clinicians and delivery systems that support them at the center, empowers them to identify critical research issues for CER and PCOR, and translates their research priorities into specific enhancements of the SUPREME-DM data infrastructure. These plans emphasize elements of infrastructure that are necessary to support studies of high-priority subpopulations (as defined by AHRQ) within the overall diabetes population, particularly the elderly and members of racial or ethnic minorities. The elements of this strategy are reflected in three specific aims: Specific Aim 1: Collaborate with a broad array of stakeholders to prioritize critical themes and topics for CER and PCOR to prevent and treat diabetes. Using a community-based participatory model of engagement, the study team will seek the input of individuals with diabetes, advocacy groups that represent them, clinicians who treat them, and agencies that support research to improve their care. These stakeholders will prioritize general themes and specific topics for future research. Specific Aim 2: Develop and test specific enhancements to the SUPREME-DM DataLink that expand its capacity to address stakeholder priorities for research to improve diabetes treatment and prevention. Critical data gaps will be assessed in pilot studies in an effort to increase the acceptability and usability of the SUPREME-DM DataLink to the patient, clinical, and research community. Specific Aim 3: Develop a 5-year plan to sustain the capacity of the SUPREME-DM Network and its DataLink to address high-priority themes and topics for CER and PCOR. The project team and selected stakeholders will outline an approach to sustain the Network and DataLink by developing additional infrastructure to meet stakeholder needs. The project team will systematically develop sustainability plans for the highest priority research themes identified in Aim 1 by pairing each theme with the stakeholder(s) most committed to that theme. These Specific Aims will help realize the vision of SUPREME-DM as a "learning research network", analogous to the learning healthcare systems envisioned under health care reform, in which the priorities of multiple stakeholders are translated into improvements in data content and governance that can, in turn, facilitate research to progressively improve the knowledge base and outcomes of care for individuals with diabetes.