Rainu Kaushal, MD, MPH, is the chair of the Department of Healthcare Policy and Research, executive director of the Center for Healthcare Informatics and Policy (CHiP), executive director of the Health Information Technology Evaluation Collaborative (HITEC), and the Nanette Laitman Distinguished Professor of Healthcare Policy and Research at Weill Cornell Medicine. She is the principal investigator of the New York City Clinical Data Research Network (NYC-CDRN), the Health Policy, Health System, and Public Health Collaborative Research Group, and a PCORnet Demonstration Study: “Identifying and Predicting Patients with Preventable High Utilization.”
Alex Low is the Project Manager of the NYC-CDRN.
The Patient-Centered Outcomes Research Institute (PCORI) funds Demonstration Studies to prove the capacity of its most ambitious endeavor, the National Patient-Centered Research Network, PCORnet, while answering critical research questions. Demonstration Studies fall into one of four initiatives: Interventional Studies, Obesity Observational Studies, Patient-Powered Research Network (PPRN) Studies, and Health Systems Studies. Health Systems Studies test PCORnet’s ability to engage health systems leaders and clinicians across Clinical Data Research Networks (CDRNs); to do focused and agile research that leverages the Common Data Model (CDM) and new health system data; and to do analyses rapidly and iteratively with systems leaders to facilitate their development of learning healthcare systems. Learning healthcare systems, as defined by the Institute of Medicine (IOM), are designed to emphasize a collaborative approach that shares data and insights across boundaries to drive better, more efficient medical practice and patient care. This guest blog examines many of the activities and key questions that are most important to the health system leaders working on these studies.
As strong advocates for efficient and effective working relationships between PCORnet and health systems, we see a significant benefit to both parties that should motivate them. PCORnet is dedicated to advancing learning health care systems and generating patient-centered, actionable evidence—making health systems a required partner for its activity. Meanwhile, health systems need high quality evidence as well as access to analysis-ready, comprehensive, longitudinal data sets to better characterize, compare, and understand their populations. Currently, more than 100 healthcare organizations participating in PCORnet allow for exploration of these opportunities.
PCORI and the National Academy of Medicine (NAM) have recognized the value of this symbiotic relationship, co-sponsoring several national meetings with leaders from health systems and PCORnet over the last few years to discuss the potential value of big data networks like PCORnet to answer questions of importance to health systems. Together with other principal investigators from PCORnet, we have taken a leading role in helping organize these meetings. The efforts started with two workshops in 2014 that were part of the Roundtable on Value and Science-Driven Health Care, and continued with two meetings in 2016 that were part of Accelerating Clinical Knowledge Generation and Use.
Themes and opportunities that emerged from those meetings included the importance of (a) timely dissemination of data; (b) key roles for health system leadership in PCORnet; (c) an integrated, national clinical data infrastructure; (d) linking health care delivery data to health plan data; and (e) establishing partnerships between research and clinical practice. Health system leaders helped to identify the topics where they could best leverage a data resource like PCORnet, their data requirements, potential extensions to the PCORnet CDM, and opportunities for engagement. They discussed the importance of embedding research into the delivery of care and then creating a feedback loop so health systems can rapidly adopt those insights—all important aspects of a learning healthcare system.
Some of the key research themes and opportunities emerging from these meetings and subsequent discussions have included:
- Identifying and managing high healthcare utilizers
- Identifying and managing the needs of specific populations by diagnoses (e.g. behavioral health) or patient characteristics (e.g., socioeconomic status)
- Comparative performance of alternative models of healthcare delivery (e.g. ACOs)
- Novel analytical tools and methods (e.g. risk adjustment and predictive modeling)
- Assessment of value in healthcare (including quality, safety, and utilization)
- Collection of social determinants of health data
- Assessment of ways to link PCORnet data to other data
- Clearinghouse of health care delivery practices and outcomes
- Dissemination science
PCORI has already put some of these themes into practice by funding health systems planning activities across PCORnet. During the six-month period, the CDRNs interviewed hundreds of health system leaders, clinicians, patients, and others from across the country to identify their priorities for using PCORnet and the research topics that would provide them with the most value. This process led to rich guidance that subsequently informed an initial set of four health system demonstration projects. We are leading one of those projects, which is focused on characterizing patients with preventable high utilization in New York City, Florida, and Chicago. In parallel, we are working with Elizabeth Shenkman, PhD, co-principal investigator for the PCORI-funded OneFlorida CDRN, to lead the PCORnet Health Systems, Health Policy, and Public Health Collaborative Research Group (CRG), which is bringing together researchers, health systems, patients and others to identify and develop fundable research proposals leveraging PCORnet and expanding the CDM.
These are important steps. The next challenge will be developing an ongoing framework for collaboration among health systems and CDRNs at the national level. To advance this framework, we continue to welcome input from all stakeholders on ways in which they can leverage PCORnet for health system projects, and especially welcome your participation in our CRG. Please reach out to Rainu Kaushal at firstname.lastname@example.org if you’re interested in joining. By leveraging PCORnet to integrate data capture for health care delivery and ongoing research, health systems can advance the concept of learning health systems, thereby driving research, operational, and policy agendas and improving healthcare delivery for patients on a wide scale.
In a recent video, Rainu Kaushal discusses the importance of how PCORnet provides robust, research-ready data for health system leaders to improve healthcare and delivery of care.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.