SUPREME-DM: Sustaining a Learning Research Network

描述（由申请人提供）：糖尿病监测、预防和管理（SUPREME-DM）网络的DataLink包含2005-2012年期间在11个综合提供系统中接受治疗的110万糖尿病患者的广泛临床和管理信息。目前的申请提出了一项战略，以维持这一国家科学资源，并进一步扩大其数据基础设施和科学 容量它将糖尿病患者和支持他们的临床医生和交付系统置于中心，使他们能够识别CER和PCOR的关键研究问题，并将他们的研究重点转化为SUPREME-DM数据基础设施的具体增强。这些计划强调基础设施的要素，这些要素对于支持糖尿病总体人群中的高优先级亚群（由AHRQ定义）的研究是必要的，特别是老年人和少数种族或民族成员。具体目标1：与广泛的利益攸关方合作，优先考虑CER和PCOR的关键主题和专题，以预防和治疗糖尿病。使用基于社区的参与式参与模式，研究小组将寻求糖尿病患者，代表他们的倡导团体，治疗他们的临床医生以及支持研究以改善护理的机构的投入。这些利益攸关方将优先考虑未来研究的一般主题和具体专题。具体目标二：开发并测试SUPREME-DM DataLink的特定增强功能，以扩展其能力，解决利益相关者的研究优先事项，以改善糖尿病治疗和预防。将在试点研究中评估关键数据差距，以提高SUPREME-DM DataLink对患者、临床和研究界的可接受性和可用性。具体目标3：制定一项五年计划，以维持管理学高级管理层网络及其数据链接的能力，从而处理核证的排减量和变革和组织振兴方案的高度优先主题和专题。项目小组和选定的利益攸关方将概述通过开发更多的基础设施来满足利益攸关方需求的方式来维持网络和数据链。项目团队将为目标1中确定的最优先研究主题系统地制定可持续发展计划，将每个主题与最致力于该主题的利益相关者配对。这些具体目标将有助于实现SUPREME-DM作为“学习研究网络”的愿景，类似于医疗保健改革下设想的学习型医疗保健系统，其中多个利益相关者的优先事项转化为数据内容和治理的改进，从而促进研究，逐步改善糖尿病患者的知识基础和护理结果。

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.