As anyone who’s ever used an electronic health record (EHR) can attest, they weren’t built with research in mind. Entering data for patients can be difficult enough, but when it comes to getting data out for a study, many researchers throw their hands up and open Excel, where they start entering data by hand.
So how to get started? The first things to consider are the format of what you need and the data systems where it is captured. Do you need a list of medical record numbers for patients who meet certain criteria? A spreadsheet with a row for each procedure that a set of providers ordered, with columns for comorbidities and medications? Carefully defining all of these questions will help you get a better sense of where to go – and it’ll make it much easier to pull what you need.
Once you’ve defined what you’re looking for, there are a number of ways to go about getting it:
- i2b2: This self-service web tool lets you run queries without an IRB protocol to identify groups of patients who meet specific criteria. You can run queries that use data elements from Epic, Allscripts, and more, but you can only get counts of patients and lists of MRNs. To get an account and learn more, email email@example.com.
- REDCap: A HIPAA-compliant, secure data capture tool, REDCap allows you to record data about patients in a collaborative online web platform. REDCap is great for manual data entry – some terms, like cyst dimension in a radiology report, require expert review. An add-on to REDCap called SUPER REDCap lets you automatically populate a REDCap form with data drawn from the EHR.
- Epic Reporting: If you need a rows-and-columns data set from Epic, this is often the best way to get it. If you have an IRB protocol and the data you want exist in Epic, put in a request at myhelpdesk.med.cornell.edu (choose Submit a Request > Epic Report Request) and fill out the form, and you’ll be connected with an analyst who will work with you to define the rows and columns you’d like to extract.
- TRAC/NYP Analytics: While the Epic Reporting option is ideally suited for data that are captured in Epic, sometimes you need to do research on data captured in other systems, such as Allscripts. Cornell requests for data from systems managed by NewYork-Presbyterian go through a system called TRAC – the Tripartite Request Assessment Committee. If you’re looking for rows-and-columns data from Allscripts, this is one of the easiest ways to get it. Visit teams.nyp.org/sites/IT/discovery to learn more and submit a request.
- Research Data Repositories: If your department has an existing research data repository, you can get access to a number of tools that offer additional ways to take advantage of EHR data for research, including a custom i2b2 instance, advanced SUPER REDCap definitions, and custom reporting from any EHR system where your patients are captured. To learn more about the research data repository, contact firstname.lastname@example.org.
Keep in mind that all of these techniques can be combined – for example, you could request a list of MRNs from an i2b2 query, then capture data manually for them in REDCap. You could then join this data with a report from the Epic Reporting team or NYP Analytics for the same patient cohort to conduct additional analyses. The possibilities are endless – to learn more, contact email@example.com.