Leveraging the EHR to enable data collection at scale through the use of standards and technology

The use of electronic health records (EHRs) to capture structured patient data should allow those data to be reused for purposes other than direct patient care, but the current processes to develop and deploy EHR-based data collection forms are inefficient, particularly when scaled to dozens or hundreds of centers. We propose to launch externally-hosted electronic Case Report Forms (eCRFs) from within the EHR, pre-populate certain fields with standard elements that have been previously collected, and allow research study staff to complete the remaining fields and send the responses to an external data repository. We will use standards such as Retrieve Form for Data Capture (RFD) and Fast Healthcare Interoperability Resources (FHIR) to address this use case. We will partner with ImproveCareNow, a 92-center quality improvement and research network (learning network) that is focused on improving the care and outcomes of children and adolescents with inflammatory bowel disease (IBD). We will implement the workflow described above by using eCRFs from an ongoing pragmatic clinical trial involving ImproveCareNow that is being funded by the Patient-Centered Outcomes Research Institute (PCORI) and by extending ImproveCareNow’s existing informatics infrastructure to support the standards- based interfaces.