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.
Data Requests
KUMC Faculty, Staff, and Students can request access to self-service reporting tools for feasibility, patient identification, chart review, automation and more. Please note that research projects may also require approval/documentation from IRB and requestors should take that process into account when planning their timelines. Research Informatics also provides custom data extraction for funding and budgeting projects. If you need data for a Quality Improvement Project, the data access process is different. Determine if your project is quality improvement.
KUMC Faculty, Staff, and Students may Submit a Research Data Request
External users may also submit data requests by emailing dataconcierge@kumc.edu or calling 913-588-7205.
Research Informatics self service tools require steps to gain access before using, once you have obtained access you can continue using the system as needed. You must meet the following requirements:
- Secure KUMC network (either on campus or via VPN)
- KU Medical Center faculty member status or sponsored by a faculty member.
- Up-to-date Human Subjects Training (CITI Biomedical Researchers
- Signed system access agreement
- Sign a Data Use Agreement
Research Informatics provides an hourly fee-for-service for custom project designs; the complexity of the project and a set fixed time will determine the estimated cost. Our informaticians will provide pricing information when responding to your inquiry. Custom project designs may include;
- Setup and management of data
- Setup and management of your REDCap project
- Custom SQL query work from HERON and/or EPIC Clarity
- Custom designs for Epic O2 projects
- Raw data cleanup for a standard HERON data request
- To request custom project design visit HERON or Epic O2 Custom Project Request Form.
- To request custom project design from C3OD visit C3OD Project Request Form.
The Healthcare Enterprise Repository for Ontological Narration (HERON) is a query and analysis tool for self-service or to request custom data extraction. HERON is an integrated clinical data repository of the electronic health record (EHR) as well as research participant registry, socioeconomic data, death data, and clinical notes. Please review the Policy: Electronic Medical Record Use for Clinical Research.
Resources
The Curated Cancer Clinical Outcomes Database (C3OD) is a query and analysis tool for self-service or to request custom data extraction. C3OD merges data from the electronic medical record, tumor registry, bio-specimen and data registry, and allows querying through a single unified platform. Data obtained from C3OD can be used to determine patient eligibility. The C3OD web application is a query builder that gives total counts and demographic breakdowns of cancer patients who meet criteria selected by the user.
Resources
Epic O2 is the University of Kansas Health System electronic health record system. Research Informatics provides research related services that are advantageous for sponsors and study teams that streamline and make the study start-up, recruitment, and maintenance more efficient, some of our services may require additional levels of time and expertise and are provided on a fee-for-service basis. Please review the EPIC O2 Research Catalog of Services to ensure if funding is required or not per tool. Please refer to the policy Using Epic O2 for Clinical Research Recruitment.
Clinical Research EPIC O2 Tools
Adverse Events Warning and Alerts (AE/SAEs)- ensures consistent documentation across studies with exact verbiage but provides flexibility to document multiple investigational medications.
Contraindicated Medication Warning(s) (CIMs) - CIMs help prevent medications that could have potentially adverse reactions or may disqualify a patient from a study, from being ordered.
Research Dashboard - Research dashboards provide a one stop-shop for links, metrics, and reporting needs, and presents data in a singular view.
e-Consenting- are available for studies that are listed and approved through the Research Administration study activation in REDCap. e-Consenting in Epic O2 will provide real time consents, the ability to consent remotely, and mitigate the need when applicable to manually upload consents.
Mychart Recruitment- Using MyChart for recruitment allows for bulk invitations to be sent out to patients and then notify the research coordinator that a participant is interested in the study.
Smart Sets & Order Sets- Smart Sets (SS) and Order Sets (OS) are preset groups of orders that speed up the ordering process by pulling all required orders into one set.
SmartTools (Include SmartPhrase, SmartText, SmartLists, SmartLinks, Wildcards) SmartPhrases - SmartPhrases allow research staff the ability to use consistent verbiage and an efficient way to bring in information to a note by typing “.” followed by the smart phrase text.
Our Practice Advisories (OPAs) - OPAs used for point of care could be utilized for randomizing to the most appropriate treatment arm/method/group based upon approved IRB inclusion/exclusion criteria signaling potentially the best course of treatment for a patient.
Reporting Workbench- provide automated cohort discovery and prescreening, building the report criteria based upon selected inclusions/exclusions.
Research Questionnaire or Questionnaire Series - provide the ability to capture responses from the study participant or they can be configured to only be viewable by study team members.
Research Tasks - the system can help research coordinators remember to complete study-related tasks by adding tasks to your protocols. These are items that are not order or visit related, but rather things like submitting case report forms or collecting patient consent.
SlicerDicer - SlicerDicer is a self-service reporting tool that provides users with intuitive and customizable data exploration abilities. This tool lets users explore Reporting Workbench results using the SlicerDicer user interface.
Request an Epic Clinical Research Study Tool
Additional EPIC O2 services
Research Study Maintenance - This request is used to receive updates for maintaining accurate Research Study Records in Epic O2 that is not interfaced from Velos CRIS. Employees added to studies must have Epic O2 access and completed Research training.
Interface and FHIR Integrations - Research Interfaces and/or Fast Healthcare Interoperability Resources (FHIR) Application Programming Interface (API)s provide a secure method for interconnecting Epic O2 and approved applications. Please reference the policy for Implementing and Using Epic O2 FHIR APIs for Research.
Telehealth for Research e-consents - Telehealth services provide research staff with the ability to schedule telehealth visits for the purpose of obtaining research consent from the participant.
EPIC Care Link - EpicCare Link provides real-time web portal access to patient information on the Epic system, which The University of Kansas Health System has included in its suite of electronic medical records called O2. Please reference the policy EpicCare Link and Care Everywhere for Research
Report an O2 Issue - report issues or get assistance related to O2. If your issues are critical, please call the Service Desk at 913-945-9999 option 1
Request Access to EPIC O2 through MyIT.
DICOM, which stands for Digital Imaging and Communication in Medicine, is the technical standard for the digital storage and transmission of medical images and related information. The DICOM service provides cloud-scale storage for medical imaging data using the DICOM standard. The DICOM service will enable investigators to store, manage, and exchange medical imaging data securely and efficiently.
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.
Resources
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.
GPC Query and Data Request Form
Interested in collaborating submit the GPC Research Opportunity Assessment
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.
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.