My Process for the

Genetics Patient Education Module

Problem

The genetic counseling department at a community-based cancer center in Denver, CO experienced a drastic reduction in genetic counselors (GCs). The standard procedure for a patient who is referred for genetic counseling and testing is to

  1. meet with a genetic counselor at an initial visit to review family history, learn about genetic testing, and consent to the testing;

  2. submit a blood or saliva sample to the testing laboratory

  3. meet with a genetic counselor in a results visit to review test results and determine next steps.

With reduced GCs, the decision was made for physicians and other practitioners to order genetic testing directly. Because genetic testing has implications for the patient, their children, siblings and parents, patients need to have enough information to consent to the test. However, physicians and other practitioners don't have the same training as genetic counselors nor do they have the time to discuss the key points during the appointment.

This module/video is available to all people at the cancer center's website.

Solution

Using notes from genetic counselors, I created a patient-facing education module to present the necessary genetics information to patients in lieu of an initial visit with a genetic counselor.

Design Considerations

  • Problem: How would patients access the module? Would each of the 13 clinics have it on a tablet to give to a patient to watch after their visit? What is the cost of that?

      • Solution: A flyer with a QR code for the online module would be posted in each exam room. Patients can use their smartphones to personally access the module. For those without smartphones, they can be given a paper copy of the slides to read through.

  • Problem: I created the first draft of the module in a free trial of Articulate Storyline. However, the company didn't want to buy Articulate Storyline, and they weren't sure how to connect the module to their website.

      • Solution: I recreated the module in Google Slides according to their preferences.

  • Problem: Genetic information can be complex and hard for patients, especially the elderly, to understand.

      • Solution: I included figures and images on most all of the slides. I created figures such as the one below when necessary. I also worked to keep the vocabulary as simple as possible.