DESCRIPTION (provided by applicant): Accountable care organizations (ACOs) are a recent health reform that seeks to provide higher quality care at lower cost. Since starting in 2012, Medicare ACOs already cover more than 5 million patients. In ACOs, clinicians and/or hospitals contract with payers to share accountability for patients' health outcomes and expenditures. Effectively engaging patients in ACOs will be critical to their success. Using a patient centered outcomes research (PCOR) engagement framework, this project proposes a novel investigation of system- level patient engagement, defined as integrating patients' preferences, values, and priorities into the design and governance of health care organizations. Medicare regulations require a "beneficiary representative" on ACO leadership boards as part of system-level engagement. Whether this effectively represents all ACO patients remains unknown, and ACOs have flexibility to develop novel methods. This proposal integrates qualitative and quantitative research to elicit patient preferences about system-level engagement in order to fill this knowledge gap and design a new patient engagement intervention. Working within Medicare ACOs led by academic medical centers, it will accomplish four aims: AIM1 will define a taxonomy of existing engagement strategies in use by ACOs and collect rich qualitative data about these strategies (e.g., regarding successes and challenges) from ACO leaders. AIM2 will elicit beneficiary representatives' perceptions of system-level engagement. The information gained from AIMS1-2 will be disseminated to assist ACOs' ongoing development of system-level engagement methods. It will also inform AIM3, which will elicit patients' expressed preferences regarding system-level engagement and assess their knowledge and attitudes toward ACOs via an in-depth study of 5 urban ACOs. Information from AIMS1-3 will be used to design a novel system-level engagement strategy and evaluate its feasibility in AIM4. The candidate is an Assistant Professor at Johns Hopkins in the Division of General Internal Medicine (GIM) and the Berman Institute of Bioethics. His long-term career goal is to become an independent clinician investigator whose innovative PCOR enhances patients' experiences of care, improves health outcomes, and lowers costs through ethically-designed, meaningful patient engagement. He has a unique background as a practicing internist with PhD training in philosophy who in 2013 completed a joint fellowship in GIM and bioethics and health policy. In the short-term, he seeks additional training necessary for PCOR, focusing on advanced qualitative methods, survey design, and the theory and practice of patient engagement. His career development plan meets his unique training needs via didactic courses at the Johns Hopkins Bloomberg School of Public Health, practical research experience, and a strong multi-disciplinary mentorship team comprising expertise in PCOR, patient engagement, health system reform, and ACOs. The mentorship team includes Drs. Jeremy Sugarman, Albert Wu, Ruth Faden, Gerard Anderson, and Scott Berkowitz. The institutional environment for the project includes several institutes and centers at Johns Hopkins. First is the Johns Hopkins Berman Institute of Bioethics (BI), an internationally recognized leader in empirical research on the ethics of medicine, public health, and health policy. Recent emphases of BI research include a Patient-Centered Outcomes Research Institute (PCORI) funded evaluation of stakeholder views of comparative effectiveness research (CER) and an effort at engaging stakeholders in the move toward Learning Health Systems (both under Ruth Faden), as well as research eliciting stakeholder views within the National Institutes of Health (NIH) Health Care Systems Research Collaboratory (under Jeremy Sugarman). Second is the Division of GIM, which supports over 90 faculty members with diverse research interests. GIM is an exceptionally active division with a track record of successfully training junior faculty. It includes a GIM Methods Core that provides research consulting services, such as study design and statistical analysis. Third is the Johns Hopkins Bloomberg School of Public Health (JHBSPH), an international leader in public health research and education. JHBSPH is home to the Center for Health Services and Outcomes Research (CHSOR, directed by Albert Wu). CHSOR is devoted to research on the organization and financing of health services, including their impact on care quality and costs, with a recent focus on PCOR, CER, and patient engagement. JHBSPH is also home to the Center for Hospital Finance and Management (directed by Gerard Anderson), which specializes in policy-relevant research on payment reform and other approaches to reducing health care costs. A final key part of the institutional environment is the Johns Hopkins Medicine Alliance for Patients
(JMAP), the Johns Hopkins Medicare ACO, which was approved in December 2013. Collaborating with JMAP and its executive director, Scott Berkowitz, affords the opportunity to study engagement in ACOs real-time and to ensure the project addresses issues of concern to ACO implementation. This project synergistically integrates these institutional components and applies them to a novel health care system reform context: system-level patient engagement in ACOs. Its findings - though ACO focused - will be relevant to health system reform generally and provide a strong foundation for future PCOR studies examining the comparative effectiveness of different system-level engagement strategies in terms of health outcomes, patient satisfaction, and costs.
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