Obtaining Clinical Data for Research
Custom data extractions from the clinical record offer researchers a powerful way to obtain large or otherwise difficult to acquire data sets for research purposes. We can rapidly extract certain commonly requested structured data sets such as demographics, billing codes and lab results and are always happy to supplement your chart review with these types of data on the patients in your study cohort.
Defining a custom research data report can turn into a time consuming and highly interactive process. Successful custom research report development can require a significant investment of time from both the researcher and the consultant, so is usually best reserved for large volume data requests. If your research cohort is manageably sized, we recommend chart review to abstract and record less commonly requested clinical variables.
If you interested in collaborating with us on defining a clinical data extract for reseach purposes, here is our process:
Your first step should be to use the Online Cohort Discovery Tool to gain a sense of what clinical data relevant to your research is in the Clinical Data Warehouse and how it can be queried. There is more information, including a user's guide, on the Cohort Tool page of this site, or you can use the button on the right to launch the tool and plunge right in.
Cohort Discovery is a useful starting point but it only exposes a small fraction of the data we have available.
If it's in Epic, we have it. And more.
So your next step should be to contact us and arrange a meeting so we can assess your research data needs.
If the data you need is available in a form we can easily report on, we can sometimes assemble your data in just a few hours work.
Specifying the content of a custom research data extract, however, is a highly interactive mutual process of discovery, since each research question has different requirements, and our reporting database presents data in a different format than Epic.
Our compliance processes are documented in their own section of our website so you can pick the one that best meets your needs.
Note that if PHI is involved, the process is considerably more complex than de-identified data, since University Privacy Office approval is required before you can use or disclose identified data for research.
Since data extraction is a labor-intensive process and our institutional funding is limited, we will typically ask you for a PTA to charge salary support to in order to cover our costs while engaged in sustained research collaborations. We track our time spent on your project and will only charge you for hours actually worked. In addition to delivering your data we will also supply you with a narrative description of the process used to obtain it, as well as an itemized invoice for services rendered.