Data Collection & Recruitment Tools
Research Informatics has free self-service tools and provides the ability for investigators to request custom data extraction for funding and budgeting projects. Also, our team can assist with the recruitment of research participants, governance, cost, and turnaround times may vary. We encourage researchers to contact us as early as possible in the design phase of a research project and, preferably, well in advance of IRB submission.
Research Informatics has instruments and methods to enable researchers and investigators to query a repository of de-identified patient information gathered from multiple sources, including electronic medical records, lab results, demographic data and more. In this part of the data lifecycle, experiments are carried out, observations made, surveys undertaken, secondary materials acquired, etc. Documentation of data collection instruments and methods and information necessary to interpret and use the data.
Feasibility, Patient Identification or Chart Review
The Healthcare Enterprise Repository for Ontological Narration (HERON) is a query and analysis tool for researchers to use a simple, drag-and drop interface to query an integrated clinical data repository of the electronic health record (EHR) as well as research participant registry, socioeconomic data, death data, and clinical notes. Researchers can build a study cohort with HERON using the i2b2 (Informatics for Integrating Biology and the Bedside) software and request de-identified and identified data.
Existing data sets from research studies with a similar population can be utilized to identify cohort attributes and occurrence, conduct sample size calculations, and determine other factors that may impact enrollment feasibility This is a valuable resource for clinical and translational research.
REDCap (Research Electronic Data Capture) enables rapid project development and provides users with advanced functionality, complete autonomy and control of a project and direct exports to common statistical packages. REDCap surveys and databases are HIPAA compliant and include audit trials.
Data used to determine patient eligibility for cancer clinical trials often come from disparate sources that are typically maintained by different groups within an institution, use differing technologies and are stored in different formats. Collecting data and resolving inconsistencies across sources to increase the time it takes to screen eligible patients, potentially delaying study completion. To address these challenges, the Biostatistics and Informatics Shared Resource at The University of Kansas Cancer Center developed the Curated Cancer Clinical Outcomes Database (C3OD). C3OD merges data from the electronic medical record, tumor registry, bio-specimen and data registry, and allows querying through a single unified platform. By centralizing access and maintaining appropriate controls, C3OD allows researchers to more rapidly obtain detailed information about each patient in order to accelerate eligibility screening. This case report describes the design of this informatics platform as well as initial assessments of its reliability and usability.
For instructions on how to use visit C3OD User Manual
PCORnet® is a PCORI-funded initiative to enable patient-centered clinical research to be conducted faster, more easily, and more efficiently. It does so by offering reusable resources and tapping into rich sources of real-world data, which are collected during routine care through electronic health records (EHRs), patient-reported outcomes, health claims, and other sources. By leveraging health information collected in everyday healthcare situations and settings, PCORnet generates real-world evidence about the comparative clinical effectiveness of therapies, diagnostics, and prevention strategies. PCORnet brings together researchers, patients, clinicians, and health systems to expedite research that can improve health care and patient outcomes. Patients and caregivers are engaged with health professionals and researchers as consultants and collaborators.
Greater Plains Collaborative (GPC) is a network of 13 leading medical centers in nine states committed to a shared vision of improving health care delivery through ongoing learning, adoption of evidence-based practices, and active research dissemination. The GPC builds on strong research programs at our sites, existing community engagement and informatics infrastructures and data warehouses developed through the NIH Clinical and Translational Science Award (CTSA) initiative at most of our sites, extensive expertise with commercial EHR systems and terminology standardization, and strong working relationships between investigators and healthcare system information technology departments. Our network brings together a diverse population of over 34 million patients across 1,550 miles covering nine states with a combined area of 758,325 square miles.
Register with Research Match as a researcher for feasibility and recruitment access, this resource is a secure NIH-sponsored volunteer registry that is available to all research team members. By registering as a researcher on ResearchMatch, researchers automatically obtain feasibility access and may view and search aggregate data within ResearchMatch.
Researchers who go on to obtain IRB approval for recruitment access within ResearchMatch will be able to contact the many locally and nationally registered volunteers.
Researchers should rely on the Institutional Liaison for help with writing the recruitment message that will be sent to ResearchMatch volunteers.
It's easy to set-up a ResearchMatch account.
The All of Us Research Program is inviting one million people across the U.S. to help build one of the most diverse health databases in history. We welcome participants from all backgrounds. Researchers will use the data to learn how our biology, lifestyle, and environment affect health. This may one day help them find ways to treat and prevent disease.
Automated Patient Recruitment
Research Informatics has recruitment tools that can be automated according to your specifications and project details. Our team will meet with investigators to get an understanding of your project, then a team member will design the informatics tool specific to your needs.
Are built directly in EPIC/O2. These alerts are triggered based on inclusion/exclusion criteria and displayed to the treating clinician. If the clinician indicates that the patient is interested in participating a notification is sent to the research coordinator.
MyChart for Research Recruitment is a tool for investigators to notify patients directly about research opportunities. By working with Research Informatics, researchers can design a search for potential volunteers that can be identified from the electronic health record information built directly in EPIC O2.
Once identified a message will be sent to the study team containing a description to the patient via the patient portal. The patient may communicate directly with the study team through in-basket messaging.
Reporting Workbench is an automated cohort discovery/prescreening tool built directly in EPIC/O2. The report identifies patients who meet inclusion/exclusion criteria and can be refreshed by the study coordinator. This is not clinician-facing. However, this must be limited to patients within the researcher’s department or obtain approval from other departments.
This service is handled in collaboration with The University of Kansas Health System Research Informatics. They set up reporting workbench reports to automatically identify patients who match a defined set of inclusion/exclusion criteria.
The University of Kansas Cancer Center Clinical Trials Finder app allows individuals to navigate active clinical trials and helps physicians/clinicians refer patients to an ongoing trial that might help with their treatment. Download the Clinical Trials Finder app.