SUPREME-DM: Sustaining a Learning Research Network

描述(由申请人提供)：糖尿病监测、预防和管理网络的数据链接包含2005-2012年间在11个综合交付系统中接受治疗的110万糖尿病患者的广泛临床和管理信息。目前的应用提出了一项战略，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，使他们能够确定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。这些计划强调了必要的基础设施要素，以支持对整个糖尿病人群，特别是老年人和种族或族裔少数群体中的高优先亚人群(根据AHRQ的定义)的研究。这一战略的要素反映在三个具体目标中：具体目标1：与广泛的利益攸关方合作，确定CER和PCOR预防和治疗糖尿病的关键主题和主题的优先事项。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个人、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他们的护理的机构的投入。这些利益攸关方将确定未来研究的一般主题和具体主题的优先顺序。具体目标2：开发和测试最高-DM数据链的具体增强，以扩大其能力，以满足利益相关者改善糖尿病治疗和预防研究的优先事项。将在试点研究中评估关键数据差距，以努力提高患者、临床和研究界对Supreme-DM Datalink的接受度和可用性。具体目标3：制定一项五年计划，以维持最高--需求管理网络及其数据链接的能力，以处理经济、社会和文化权利委员会和变革和组织振兴方案的高优先主题和专题。项目组和选定的利益攸关方将概述一种方法，通过开发更多的基础设施来满足利益攸关方的需求，从而维持网络和数据链。项目组将系统地为目标1中确定的最高优先研究主题制定可持续性计划，将每个主题与最致力于该主题的利益攸关方(S)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，类似于医疗改革中设想的学习型医疗保健系统，在该系统中，多个利益相关者的优先事项被转化为数据内容和管理的改进，这反过来又可以促进研究，以逐步改善糖尿病患者护理的知识库和结果。

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.