Getting started on a COPD registry

This document explains how to use standardized queries in your EMR to start building chronic disease registries.  The instructions below focus on COPD. The COPD query is intended for teams that do not yet have a reliable list of COPD patients and don’t have the time or resources to start from scratch in reviewing all their patients to generate such a list.  Right now, it is also only for teams with PSS or Accuro although work is continuing to expand the standardized query to OSCAR and Nightingale. The following steps will help your team use the query to generate a list of COPD patients, starting from your EMR.

Step 1. Estimate how many patients you think this will affect.  Multiply the number of patients your team serves by 0.12 (the average rate of COPD in Ontario) to get a rough idea of how many of your patients likely have COPD.  If you still think this is a big enough group of patients for you to generate a registry for, carry on to step 2.

Step 2. Import the query into your EMR.  Right now, you can only do this if have either Telus PSS,  QHR Technologies Accuro or OSCAR EMRs.  You will likely need the help of your QIDSS, IT staff or other person who usually works with your EMR to do this.

  • For PSS, click here to import the PSS SRX file into your EMR.
  • For Accuro, download the query “AFHTO COPD Frontend Search” from their publisher.
    • Click here for instructions on how to download the query
  • For Nightingale EMR queries cannot be exported and shared so please access the "how to" instructions on Trello - they explain the process to create a COPD registry.
  • For OSCAR copy the query text into a Notepad file and save locally to your computer.  Instructions on how to import the query into your OSCAR EMR can be found here.

Step 3.  Run the query in your EMR. Again, you might need the help of your QIDSS, IT staff or other person who usually runs queries in your EMR.  Running the query will produce a list of patients with COPD.  The list will not be perfect – probably 15% of the patients identified by the query will NOT have COPD.  The query gets you STARTED in building the COPD registry but doesn’t do the whole job for you.

Step 4. Find the patients who might not have COPD. Review the list of patients generated by the query to separate out those patients that are clearly already coded as having COPD.  What’s left will the list of patients who MIGHT have COPD based on other data in the EMR besides formal coding.

Step 5. Prepare your physicians to review the list  Subdivide the list of possible COPD patients into separate, shorter lists for each physician.  Work with your physicians to find out if they would prefer a list on paper or electronically and how they might like it sorted (ie by name or most recent visit or some other parameter).

Step 6Invite each physician to review their list of patients.  They know their patients best and can likely quickly confirm which ones do or do not have COPD, even though that information might not be easy for others to find in the EMR.

Step 7Clean up your EMR data.  Add COPD codes to the EMR for each patient that the physician confirms as having COPD.  This so-called “data cleaning” work is a great job for a student.  AFHTO has created a toolkit to assist members in recruiting and using students for data clean-up. Click here for the toolkit.

Step 8Re-run the query .  After you have corrected the EMR, re-run the query to generate a list of patients with COPD.  This is your new COPD patient registry.  Going forward, you can run the query anytime you need to generate a list of COPD patients.  You can use the list to invite patients to a lung health program, track progress with outcomes on these patients once you have started such a program or any other purpose. This query was produced by and for QIDSS in support of all AFHTO members. 

If you have any questions please contact improve@afhto.ca.