Our proposed clinical data research network (CDRN)—the Patient-Centered Network of Learning Health Systems (LHSNet)—is designed to support research to improve health care in ways meaningful to patients, their families, and providers. Our network will bring together diverse institutions as partners. Approximately 10 million people are served by these partners, including patients in underserved and rural areas. Our goals are to build the infrastructure to (1) facilitate patient-centered outcomes research; (2) support large pragmatic clinical trials, and observational and interventional comparative effectiveness research studies embedded within the healthcare systems; and (3) enable the dissemination, implementation, and evaluation of clinical and community efforts to improve population health.
Through standing advisory councils, all stakeholders, including patients and families, clinicians, researchers, health systems, and payers, will collaborate to develop our network and conduct research. This will ensure that patient needs always drive our work, which will in turn lead to trustworthy and relevant information most likely to be adopted clinically.
These goals can be accomplished rapidly because members of LHSNet have been collaborating for more than 10 years and have strong relationships with patients and communities, academic medical centers, universities, healthcare systems, and payers. LHSNet sites have extensive experience working within networks and consortia to improve healthcare delivery, and LHSNet has committed to partnerships with existing Phase I CDRNs (Chicago Area Patient Centered Outcomes Research Network, New York City CDRN) and patient-powered research networks (Health eHeart Alliance, Mood-Patient Powered Research Network, and NephCure Kidney Network) to support initial studies in three disease cohorts: heart failure (common condition), osteogenesis imperfecta (rare condition), and obesity.
Further, several members of LHSNet are industry leaders in developing methods and tools for longitudinal healthcare data standardization, data linkage, data privacy, natural language processing, and computable phenotyping from electronic health records (EHRs). LHSNet sites have a long history of excellence in clinical research and expertise in conducting clinical trials, including centralized Institutional Review Boards and the identification of patients eligible for trials using EHRs.
The members of our proposed LHSNet CDRN share mutual trust and commitment to generate patient-centered knowledge, and disseminate it widely to rapidly and continuously optimize care. These powerful relationships, along with our extensive collective experience, optimally position our network to join the PCORnet family to create the research data networks of the future in support of a national learning health system designed to improve health care and health.
View more about this project on PCORnet.org.
^ Jyotishman Pathak, PhD was the original principal investigator for this project.
Finney Rutten LJ, Alexander A, Embi PJ, et al., Patient-Centered Network of Learning Health Systems: Developing a resource for clinical translational research, Journal of Clinical and Translational Science (February 2017).