Patient-reported Genetic testing Utility InDEx (P-GUIDE)™

About P-GUIDE™

Understanding patient values and preferences is essential to patient-centred care and strong healthcare policy.  

However, standardized ways of measuring the value of genetic testing from a patient’s perspective are limited. To address this, we are using a robust measurement science approach to co-design P-GUIDE™ with patient partners.   

 In our first phase of development, P-GUIDE™ will be oriented toward parents and caregivers of children who have undergone genetic testing.  

Once P-GUIDE™ has been validated, it can be used to determine the personal utility of genetic testing in a range of clinical settings. Evidence from these studies will be used to inform patient-centred care, policy decisions and funding recommendations.    

P-GUIDE™ Adaptations

How patients value genetic testing varies greatly, depending on the reason for testing, the type and the result of the testing, their age, and other aspects of their lived experiences.  

 For example, how genetic testing is valued by pregnant individuals is likely to be different from how it is valued by parents and caregivers of children with cancer.  

 Therefore, we are adapting P-GUIDE™ to meet the unique needs of different patient populations.  

Student Supervision

We are currently accepting students at the MSc, PhD, and Post-doctoral levels. Please contact Dr. Robin Hayeems to hear more about the opportunities we offer!

Get in Touch!