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Louisiana Clinical Data Research Network becomes part of new national network

Lizheng Shi

Dr. Lizheng Shi, PhD, Regents Associate
Professor of Global Health Systems and
Development, is a co-director of the Health
Systems Analytics Research Center, which
will be heavily involved in the network.

(Photo: Rick Olivier)


A team led by the Louisiana Public Health Institute (LPHI) has been approved for a funding award by the Patient-Centered Outcomes Research Institute (PCORI) to develop and expand a health data network that will be part of PCORnet: the National Patient-Centered National Clinical Research Network. The Louisiana Clinical Data Research Network (LCDRN) is one of 29 approved for a total of $93.5 million from PCORI on December 17 to form this new national resource that aims to boost the efficiency of health research.

PCORI envisions PCORnet to be a secure, national data network that improves the speed, efficiency, and use of patient-centered comparative effectiveness research (CER). By integrating data available in the 29 individual networks, PCORnet aims to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs. It will reduce the time and effort needed to launch new studies and focus research on questions and outcomes especially useful to patients and those who care for them.

The Louisiana Clinical Data Research Network (LACDRN) is based on a partnership between the Louisiana Public Health Institute (LPHI), Pennington Biomedical Research Center (PBRC), and the Tulane University School of Public Health and Tropical Medicine. Dr. Lizheng Shi, PhD, Regents Associate Professor of Global Health Systems and Development, is a co-director of the Health Systems Analytics Research Center, which will be heavily involved in the network. The proposed network will advance the capacity to conduct efficient clinical research on two highly prevalent health conditions, obesity and diabetes, in addition to multiple associated comorbidities, sickle cell disease, and some rare cancers. By conducting on-going, broad patient recruitment across the partner health systems to build cohorts, the LACDRN will improve access to these particular patients for patient-centered outcomes research. The primary purpose of the initial 18-month project period is to build the infrastructure for a combined network of approximately 1 million unique CDRN-eligible patients and their longitudinal clinical records.

The LACDRN partners have a rich background in translational research and clinical trials related to the focus health conditions as well as in community and patient engagement. Both Pennington and Tulane University have extensive experience conducting various research studies, including retrospective comparative effectiveness research, prospective quasi-experimental designs, and prospective randomized clinical trials. LPHI has been an effective convener of health systems development programs in partnership with state and local health departments, safety net providers, and community organizations. LPHI successfully led the post-Katrina rebuilding efforts of primary care through the Primary Care Access and Stabilization Grant and, more recently, partnered with community providers in New Orleans to demonstrate improvements in population health through the Crescent City Beacon Community program.

The LACDRN will provide a large volume of comprehensive, longitudinal, and up-to-date clinical data on a diverse, state-wide patient population and a unique opportunity to study and test health system improvements and conduct CER in an underserved, safety-net population that faces significant environmental, socioeconomic, and health challenges. The project will also employ innovative technologies in the routine collection of patient-reported data both within and outside the clinical setting. The availability of this innovative data resource will enhance the efficiency and effectiveness of clinical and population health research that will ultimately improve healthcare delivery and health outcomes within and beyond the network’s patient population. By actively and continuously engaging patients, clinicians and health systems leadership in the LACDRN governance, design and implementation, the network will be a patient-centered, community-based resource that prioritizes and facilitates clinical research to addresses patients’ needs in Louisiana.

During the next 18 months, the LACDRN will use the PCORI funds to expand and improve its systems, work to standardize its data, and be part of the process to develop policies governing data sharing and security and protection of patient privacy. It also will refine its network’s capacity to engage and recruit patients and other stakeholders interested in participating in research.

All awards are approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.

 

December 17, 2013
Dee Boling
dboling@tulane.edu

 

 

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