Improving Patient-Centered Outcomes Research in Pediatric Subspecialities

描述(由申请人提供)：比较有效性研究(CER)，特别是关注以患者为中心的结果研究(PCOR)，有可能为患者和提供者提供关于哪些治疗和干预措施最好地解决特定临床情况和优先事项的有价值的信息。虽然我们的机构有一个 由于在卫生服务研究方面有丰富的经验，这项工作倾向于关注传统的测量方法，如特定临床事件的存在或不存在、生理测量和测试结果。虽然印第安纳大学医学院(LUSM)和印第安纳大学健康学院(Lu Health)的一些研究人员在他们的研究中纳入了以患者为中心的结果，但患者的经历和对他们自己结果的评估并不是我们大多数研究的优先事项。此外，我们的儿科健康服务 研究一直以普通儿科人群为目标，忽视了在 子专业领域。因此，这项建议的具体目标是：(1)建立基础设施，以扩大我们对儿科专科的研究能力；(2)建立以患者为中心的严谨研究计划和CER；(3)为从事儿科专科CER/PCOR的教师建设能力和培训；以及(4)开发将研究结果纳入更大医疗保健系统的方法。为了实现这些具体目标，我们将在路易斯安那州立大学和鲁健康中心建立儿科比较有效性研究中心。该中心将由四个“核心”(即，教师指导/发展、患者参与、信息学和实施科学)组成，它们将以协作、综合的方式共同发挥作用，开发和实施CER/PCOR，以及实施和传播有效的、基于证据的做法。我们的愿景是，该中心的CER/PCOR将在鲁健康的所有儿科专科学科中进行。我们将建立中心的环境非常适合实现我们的特定目标，与LUSM和LUH内现有组织、资源和领导人的积极合作将显著增加我们在中心工作的成功和可持续性的可能性。

DESCRIPTION (provided by applicant): Comparative effectiveness research (CER) particularly that which focuses on patient-centered outcomes research (PCOR), has the potential to provide patients and providers with valuable information on what treatments and interventions best address specific clinical situations and priorities. While our institution has a great deal of experience in health services research, this work has tended to focus on traditional measures, such as presence or absence of a particular clinical event, physiological measures, and test results. While some investigators at the Indiana University School of Medicine (lUSM) and Indiana University Health (Lu Health) have included patient-centered outcomes in their research, patients' experiences and evaluations of their own outcomes are not a priority in most of our research. Additionally, our pediatric health services research has been targeted at the general pediatric population, ignoring the great need for work in subspecialty areas. Therefore, the specific aims of this proposal are to: (1) Build infrastructure o expand our research capacity into pediatric subspecialties, (2) Establish a rigorous research program that is focused on patient-centered outcomes and CER, (3) Build capacity and training for faculty who will engage in CER/PCOR in pediatric subspecialties, and (4) Develop methods for incorporating findings into the larger health care system. In order to achieve these specific aims, we will establish the Center for Pediatric Comparative Effectiveness Research at lUSM and lU Health. This Center will be comprised of four "Cores" (i.e., Faculty Mentorship/Development, Patient Engagement, Informatics, and Implementation Sciences) that will function together in a collaborative, integrated fashion for the development and conduct of CER/PCOR as well as the implementation and dissemination of effective, evidence-based practices. Our vision is that CER/PCOR in the center will be conducted across all pediatric subspecialty disciplines at lU Health. The environment in which we will establish the Center is ideally suited for achieving our specific aims, and active collaborations with existing organizations, resources, and leaders within lUSM and lUH will significantly increase the likelihood of success and sustainability for our efforts in the Center.