The southern United States has the highest rates of obesity, diabetes, cardiovascular disease, certain cancers, and other conditions, as well as significant rates of health disparities. We propose the development of a Mid-South Clinical Data Research Network (CDRN) centered at Vanderbilt University. This network will focus on health systems in the southern United States that reach rural and urban populations, but will also include the capacity to reach a national population. Our proposed CDRN will encompass three large health systems:
- the Vanderbilt Health System, which currently includes electronic health records (EHRs) for over 2 million patients,
- the growing Vanderbilt Healthcare Affiliated Network (VHAN), which currently includes 32 hospitals, hundreds of ambulatory practices, and will cover over 3 million patients in the mid-South, and
- a partnership with Greenway Medical Technologies and other national organizations to provide access to over 24 million patients across the country.
These groups were deliberately assembled to provide synergy in constructing comparative effectiveness research (CER) capabilities via diverse performance sites bringing different strengths.
Vanderbilt has developed a comprehensive EHR system over nearly two decades, and is consistently ranked as one of the “most wired” health systems in the nation. The robust EHR includes all inpatient and outpatient clinical and administrative data, and is designed to interoperate with other health information technologies (HIT) and EHR systems. The EHR is implemented as a secure Web-based system that can be rapidly customized as needed to store and integrate new forms of patient data through clinical templates or patient-facing surveys, and for new management interventions. A key advantage of using the Vanderbilt EHR system for this project is that it allows us the ability to control all aspects of how it is implemented, which will confer an agility to implement changes as new data and decisions are needed. Vanderbilt has also developed an array of complementary HIT tools that demonstrate our ability to produce a thriving CDRN including:
- a Web-based patient portal that currently includes 220,000 users;
- validated algorithms that use claims data, clinical data, and natural language processing of text data to automatically identify patients with certain conditions and provide integrated clinical decision support;
- patient-facing tools that allow for daily assessment of patient activities and patient reported outcomes;
- the Synthetic Derivative, a tool that uses text processing and concept indexing to enable user-customized research on de-identified clinical data from all records in the EHR, and the Research Derivative tool for researching identifiable data;
- the Subject Locator tool for identifying patients with certain characteristics for study recruitment;
- REDCap, our nationally adopted Web-based data collection system;
- BioVU, an integrated biologic repository with 175,000 DNA samples linked to de-identified patient data; and
- ResearchMatch.org and CommunityResearchPartners.net, Web-based tools for matching researchers, patients, and community organizations.
The proposed CDRN will allow us to:
- expand our data network to include two other clinical data networks, the VHAN and Greenway systems;
- develop data integration/interoperability between all sites across the three systems;
- expand and optimize patient-facing tools for collection of patient data, including research consent, behaviors, quality, adverse events, and outcomes; and
- improve our current tools for extracting and presenting data for research.
This includes the integration of health information including genetic/epigenetic and biologic data, clinical data, claims data, birth/death certificate data, patient reported data, and other local and national data. We will also develop vital patient, provider, and community engagement, which will include active CDRN advisory boards, listening sessions to identify priorities and needs, and a more rigorous process for eliciting patient and provider input to specific research studies.
We will demonstrate CDRN capacity through identification, recruitment, and data collection from three cohorts:
- sickle cell disease (SCD),
- coronary heart disease (CHD), and
Identification of the SCD Cohort will occur through our EHR and direct patient contact at our community-based Comprehensive Sickle Cell Center (a joint effort of Vanderbilt University and Meharry Medical College), which sees ~90% of the pediatric/young adult SCD patients in middle Tennessee. The CHD cohort will be recruited from across the VHAN system and demonstrate our ability to robustly identify and extract data from our EHR, to reach patients through our patient Web-portal, and to link to genomic and other clinical data. The obesity cohort will demonstrate our capacity to collaborate with Greenway to use HIT tools to identify, recruit, and collect data on patients from across the country. By 18 months, we anticipate the CDRN will readily take on future projects in CER, pragmatic clinical trials, and other key research areas. Our site would also have the capacity to share data and HIT nationally to advance research. The sustainability of the network will be supported by its efficient design, by our own health system, and by future externally funded research opportunities. Our vision is that this CDRN propels patient-centered outcomes research to advance health for all.
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Inviting Voices to be Heard
Underserved communities are impacted by research and should have a voice in it, says Neely Williams, a patient advocate and co-primary investigator of this study.