When a patient undergoes genetic testing, it’s critical that they have a full understanding of each of the benefits and risks associated with learning the thousands of possible “incidental results” and their associated implications — in order to make informed decisions.
Unity Health, formerly known as St. Michaels Hospital in Toronto, came to us with an idea to help fill a gap, where they had noticed a growing number of patients undergoing genetic testing. They could see these patients being met with a system with limited genomics expertise, time and capacity to fully educate them and assist in the decision-making process.
Unity Health developed a prototype called Genetics Adviser, to provide education and help patients choose which, if any, incidental results they’d like to learn from their genetic testing.
After gaining an in-depth understanding of the primary users, Pivot conducted a high-level audit of the current product and the Unity Health team’s existing research to identify opportunities for improvement and ways in which we could optimize the digital user experience of the tool.
The tool guides the user first through a series of three sections: Learn, Explore, and Choose, followed by two consecutive follow-up sections later on, once to Check-In, and the last to deliver Results.
In the “Learn” section, the user can watch a series of six short animated videos, created in-house, which introduce the concept of genetic testing, along with the five common categories of genetic testing results they might opt to learn.
After gaining a general understanding of what can be learned through incidental results, the user has the chance to Explore how learning certain results might impact themselves, their family, potential treatments in the future, and so on. An algorithm was developed for users to answer a series of questions, to help understand where they stand in wanting to receive genetic information about their health, based on their individual values.
Once the user has a clearer understanding of what they might be learning through genetic testing, they are invited to Choose the results category(ies), if any, they would like to learn from their testing.
The user’s decision, which they can change at any time, is sent to their genetic counselor. The tool follows up with the user two months before their testing results are ready, to Check In. Feelings around genetic testing can change at any time, so we understood the importance of following up with the patient to see how they’re feeling while they wait for their results, giving them the opportunity to change their mind if needed.
Once the results from their genetic test are ready, they are uploaded into the tool by a genetic counselor, and sent through for the patient’s reference.
Tools in this space simply did not exist before the Genetics Adviser, so a major goal was to make the tool flexible enough that it could be used as a decision support tool for a variety of specialties to “plug and play”. For example, if a cardiologist were to send the tool to a patient, they could “turn off” any content within the tool that does not coincide with their speciality.
In the summer of 2021, Genetics Adviser 2.0 was acquired and adapted by a clinical practice in Australia.
Genetics Adviser 2.0 has just completed extensive user testing, with overwhelmingly positive feedback across the board. As of winter 2022, Pivot has begun working with the Unity Health team again, to develop an extended version of the tool with additional functionality.