Lake Pamona is the first place our HERON visits since organizing our roadmap as a tour of lakes and rivers in Kansas.

As well as a monthly refresh of source data, in this release we deployed solid state storage to address performance issues:

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HERON Pomona Contents Summary

The HERON repository contains approximately 475 million real observations from the hospital and clinics:

Beta Disclaimer

We are providing this early access to obtain feedback from you, the research community. While we are actively working on validating the data loaded into the system with hospital and clinic technical staff, there may be problems with our translation of data from our source systems (HospitalEpicSource and ClinicIdxSource) into HERON.

Please email us at heron-admin@kumc.edu if you discover information you believe may be erroneous.

We are actively working on enhancing the types of data included. Stay tuned to our roadmap to track progress toward upcoming releases.

Various Issues Still Apply

Keep in mind the issues noted in the original HERON beta notice, including:

• date shifting, part of our DeIdentificationStrategy
• age searching (#158)

Outstanding Problems/Defects/Issues

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We'd like to thank everyone who came to the first Frontiers Clinical/Translational Informatics Clinic yesterday.

The clinic is scheduled for 4pm every other Tuesday in Library Room 1040. As the ​announcement said:

The Frontiers Clinical/Translational Informatics Clinic exists for investigators needing assistance using informatics tools for data exploration, cohort discovery, and data collection. The clinic is a brainstorming session and an education forum for investigators and informatics to share knowledge, provide feedback, and optimize the use of systems such as: - REDCap for data collection - the HERON clinical data repository and its i2b2 application - and other systems developed as part of Frontiers: Kansas City's Clinical and Translational Science Award.

It was interesting to chat with everybody, from investigators with proposals in development to research nurses, study coordinators, etc. We introduced our systems and talked about how they can be used to support research.

CRIS? is KUMC's custom installation of Velos eResearch, the highly-regarded clinical research information system chosen by 20 medical institutions with top 25 ratings.

For those doing a clinical trial, specially for cancer or an investigational drug where adverse event reporting is requred, CRIS is the way to go:

• ​Register your project with the Biostatistics Department
• ​Request CRIS Training

REDCap allows you to build and manage online surveys and databases quickly and securely. It's used by thousands of projects at hundreds of institutions.

If you are building a patient registry or a lightweight trial at KUMC, try REDCap:

• ​Try REDCap now
• ​REDCap video training
• ​Register your project with the Biostatistics Department to go beyond just trying it out.

HERON allows you to explore de-identified data from Epic/O2 (the hospital electronic medical records) and IDX (the clinical billing system). We talked about capabilities and access rules for HERON, using some HERONTrainingMaterials? for reference.

Access to de-identified data is non-human subjects research and does not require approval by the HSC/IRB. For qualified faculty who want view-only access to do patient count queries, executing a system access agreement is the only requirement.

A Data Request Oversight Committee (DROC) oversees requests to:

• sponsor collaborators and research team members
• extract de-identified data sets

For access to identified data, you will need an IRB approved protocol.

We look forward to meeting with our user community again in two weeks.

​Dan, Kahlia, Arvinder, and ​Russ