Research Data Brokerage
Researchers can access many data sources through the IBI data brokerage services. To request data from our current Honest Brokers.
Data resources include:
- Data Extraction - UK HealthCare
Clinical data from different UKHC electronic systems which has been integrated into an Enterprise Data Warehouse and made available for investigators use.
- Data Extraction - UK HealthCare Biospecimens
Provides access to biological specimens, biobanking services, and training for investigators in biospecimen-related research
- Data Extraction – UK Health Plan Data
This dataset contains medical and prescription claims data for UK health Plan members.
- Data Extraction - Truven Health Analytics
This database contains de-identified data Marketscan Commercial Claims and Encounters and Medicare Supplemental Databases.
- Data Extraction - KY CFHS Hospital Inpatient Discharge & Outpatient Services Da…
OHP collects both inpatient hospital discharge and outpatient services data (which includes emergency department data).
- Data Consultation - Participant Recruitment
The data needed to conduct a feasibility assessment and obtain patient counts for participant recruitment.
Become a CCTS Research Data Navigator for your Department
The Center for Clinical & Translational Science and the Institute for Biomedical Informatics is launching a new Research Data Navigator program. The program will have extensive hands-on instruction (estimated 94 hours over 3 months) in HIPAA Privacy, Data Governance, Research Design, How to work with Statisticians, Review of the data structure, work flow and regulatory compliance procedures, hands on consultations with researchers, shadowing experiences with existing honest brokers, writing data specifications and SQL code for data extractions, as well as, performing secondary reviews of code. Demonstrations and training on EPIC Slicer Dicer and COSMOS tools will also be available.
If becoming a Research Data Navigator for your College and/or Department sounds interesting, please discuss the commitment with your supervisor. The first cohort will begin November 1st and will end February 9th.
To apply to the program, please complete the Application and SQL coding test. Apply here
Applications will be taken year-round and we plan to have several cohorts over the next year. Deadline for our first cohort is October 20, 2023.
FAQs
What is an honest broker?
- What is an honest broker?
- A neutral intermediary (person or system) between the individual whose tissue and data are being studied, and the researcher. The honest broker collects and collates pertinent information regarding the tissue source, replaces identifiers with a code, and releases only coded information to the researcher. [department of Health & Human Services]
- An honest broker is an entity that keeps sets of private information but distributes parts of those sets to other entities who should not have access to the entire set. Honest brokers often work in clinical research with biological specimens; in that case, donors of specimens allow researchers to do research on those specimens, but typically want their specimen de-identified by having protected health information separated from it. The honest broker would keep both the specimen and associated protected health information, but only allow researchers to have access to the specimen without the protected health information. [Wikipedia]
What access will I have as an honest broker?
- What access will I have as an honest broker?
An honest broker will have access to curated datasets created by the CCTS honest broker team. These curated datasets are specific to a common clinical theme. If curated datasets are not sufficient for the researcher’s request, honest brokers can directly access the CCTS data schema in The UKHC Clinical Data Warehouse. Honest brokers will also have an account set up in two EPIC applications-Slicer Dicer COSMOS.
What data will I be able to release to researchers as an honest broker?
- What data will I be able to release to researchers as an honest broker?
The CCTS has an umbrella IRB protocol that is used for honest brokers release of deidentified data and limited data sets to researchers.
What is a deidentified data set?
- What is a deidentified data set?
As defined by HIPAA, deidentified data sets are data sets stripped of certain direct identifiers that are specified in the Privacy Rule.
A deidentified data set is protected health information that excludes the following direct identifiers of the individual or of relatives, employers, or household members of the individual: (1) names; (2) postal address information, other than town or city, state, and ZIP code; (3) telephone numbers; (4) fax numbers; (5) e-mail addresses; (6) social security numbers; (7) medical record numbers; (8) health plan beneficiary numbers; (9) account numbers; (10) certificate/license numbers; (11) vehicle identifiers and serial numbers, including license plate numbers; (12) device identifiers and serial numbers; (13) web URLs; (14) Internet Protocol (IP) address numbers; (15) biometric identifiers, including fingerprints and voiceprints; and (16) full-face photographic images and any comparable images.
What is a limited data set?
- What is a limited data set?
As defined by HIPAA, limited data sets are data sets stripped of certain direct identifiers that are specified in the Privacy Rule. They are not de-identified information under the Privacy Rule.
A limited data set is protected health information that excludes the following direct identifiers of the individual or of relatives, employers, or household members of the individual: (1) names; (2) postal address information, other than town or city, state, and ZIP code; (3) telephone numbers; (4) fax numbers; (5) e-mail addresses; (6) social security numbers; (7) medical record numbers; (8) health plan beneficiary numbers; (9) account numbers; (10) certificate/license numbers; (11) vehicle identifiers and serial numbers, including license plate numbers; (12) device identifiers and serial numbers; (13) web URLs; (14) Internet Protocol (IP) address numbers; (15) biometric identifiers, including fingerprints and voiceprints; and (16) full-face photographic images and any comparable images.
Importantly, unlike de-identified data, protected health information in limited data sets may include the following: city, state and ZIP codes; all elements of dates (such as admission and discharge dates); and unique codes or identifiers not listed as direct identifiers.
Recognizing that institutions, IRBs and investigators are frequently faced with applying both the Common Rule and the HIPAA Privacy Rule, OHRP does not consider a Limited Data Set (as defined under the HIPAA Privacy Rule) to constitute individually identifiable information under 45 CFR 46.102(f)(2). [Department for Health and Human Services]
Can I release protected health information?
- Can I release protected health information?
Honest brokers are not used when creating data sets with PHI. An honest broker is only needed when you need a firewall between the PHI and the researcher. Access to resources is only for honest broker activities. Additional access approvals may be needed to release PHI to researchers.
I don’t know SQL coding, should I apply?
- I don’t know SQL coding, should I apply?
We will review SQL tests submitted with the application and make recommendations if we feel additional SQL coding instruction is needed for you. You can resubmit a new test at any time for consideration in the next cohort. UK has free training in LinkedIn that you can review for additional SQL coding skills.
UK’s LinkedIn Learning: https://hr.uky.edu/training/uk-hr-training-development-now-offering-linkedin-learning search “SQL” after logging in and setting up account, and you should be able to find plenty of courses.