Clinical Data Navigator
Frontiers: University of Kansas Clinical and Translational Science Institute (KU CTSI) informatics provides capabilities and expertise for clinical investigators/researchers and other health professionals in software engineering, data warehousing, integrating research and recruitment within Epic, data management and administration of clinical trial and electronic data capture systems. Frontiers works with internal and external partners for consultation, training and access to tools enabling research data collection. The services/resources include:
Provides access to methods and systems:
- HERON (EMR investigation)
- REDCap (database management)
- Deep phenotyping
Integrates research & clinical workflow:
- Leverages the EMR to advance research
- Facilitates patient data collection
The Healthcare Enterprise Repository for Ontological Narration (HERON) is a method to integrate clinical and biomedical data for translational research. The open-source HERON framework has been distributed to collaborators using the i2b2 (Informatics for Integrating Biology and the Bedside) software. This permits integration of Epic, North American Association of Central Cancer Registries (NAACCR) , research participant registry, national death data and free text physician notes. This leverages other open source environments to increase data transparency and reusability.
One of the first steps to assess capacity for adequate trial enrollment is to accurately identify potential participants. Database tools developed by the Frontiers Informatics core integrate estimates of patient volume with providers’ clinical research experience. Investigators can use HERON, the KU i2b2 integrated data repository, to assess the number of potential participants for a study. HERON can link participants in the Frontiers and Pioneers Registries with data in the HER. Frontiers and Pioneers are registries of patients who have provided permission to be contacted for clinical studies. Both the Informatics Navigator and the Recruitment and Trial Innovation Navigator assist investigators with training needed to use HERON and other relevant resources.
REDCap and Deep Phenotyping
REDCap is used by more than 700 institutions in over 60 countries and has become a dominant tool for electronic data capture for research at most academic medical centers in the United States. Building upon REDCap and HERON, Frontiers can implement novel methods using various data beyond the EHR (such as data from wearable sensors, video, disease specific clinical tests, etc.). These methods reliably can define cohorts and integrate necessary variables from sources that are not supported traditionally by EHRs and common data models. This deep phenotyping permits investigators to study special populations that are crucial to clinical and translational research.
Greater Plains Collaborative (GPC) and GROUSE
Frontiers Informatics leads the PCORnet Clinical Data Research Network with 16 million patients from Texas to Wisconsin, supporting both recruitment and data access to EHR, registry, and claims data for observational studies at 12 medical centers across eight states.
Health System EHR Integration
Integrating research within clinical workflows provides support for clinical and translational research within the patient experience and at the point of care. This seamless integration within the EHR enables participant recruitment, collects patient-reported outcomes via patient portals and deploys decision-support within the EHR.