Improving Patient-Centered Outcomes Research in Pediatric Subspecialities

描述（由申请人提供）：比较有效性研究（CER），特别是侧重于以患者为中心的结局研究（PCOR）的研究，有可能为患者和提供者提供关于哪些治疗和干预措施最能解决特定临床情况和优先事项的有价值信息。虽然我们的机构 由于在卫生服务研究方面积累了大量的经验，这项工作往往侧重于传统的措施，如存在或不存在特定的临床事件，生理措施和测试结果。虽然印第安纳州大学医学院（lUSM）和印第安纳州大学健康（Lu Health）的一些研究人员在他们的研究中包括了以患者为中心的结果，但患者的经验和对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 研究一直针对普通儿科人群，忽视了在以下方面开展工作的巨大需求： subspecialty领域。因此，该提案的具体目标是：（1）建立基础设施，将我们的研究能力扩展到儿科亚专业，（2）建立严格的研究计划，重点是以患者为中心的结果和CER，（3）为将从事儿科亚专业CER/PCOR的教师建立能力和培训，以及（4）制定将研究结果纳入更大的医疗保健系统的方法。为了实现这些具体目标，我们将在lUSM和lU Health建立儿科比较有效性研究中心。该中心将由四个“核心”组成（即，教师指导/发展，病人参与，信息学和实施科学），将共同发挥作用，在合作，综合的方式为CER/变革和组织振兴方案的发展和进行，以及实施和传播有效的，以证据为基础的做法。我们的愿景是，中心的CER/PCOR将在lU Health的所有儿科子专业学科中进行。我们将建立该中心的环境非常适合实现我们的特定目标，与lUSM和lUH内的现有组织，资源和领导者的积极合作将显着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.