Improving Patient-Centered Outcomes Research in Pediatric Subspecialities

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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.