Optimizing Patient/Caregiver Engagement with the Canadian Cystic Fibrosis Registry

Optimizing Patient/Caregiver Engagement with the Canadian Cystic Fibrosis Registry

Presented by: Max Clayson, Lara Woldmar, Coral Fairhead, Matthew Costa-Parke and Anne-Marie Bisson 

Abstract 

The Canadian Cystic Fibrosis (CF) Registry is a powerful tool developed by CF Canada that has helped improve the quality of CF research. Standardized clinical data is recorded in the registry after each patient visit to their CF clinic and can currently be accessed solely by clinicians and researchers. Beginning in 2018, patients will be able to view their data in the registry for the first time through an online portal. Though patient portals are associated with numerous benefits, they have historically achieved low adoption and engagement rates.

To overcome these barriers, Legato Consulting presents a strategy to optimize patient engagement with the portal by overlaying individual patient data with genotype and age-specific averages with the purpose of personalizing data presentation and providing context for the data. Through patient interviews, as well as patient, clinician and other registry surveys, we have found patient-patient comparison to be a desired and valuable tool for patients. We also provide validation of these findings through literature support. Furthermore, case studies with individual CF patients/caregivers and other disease registries demonstrate that the desire to compare will translate into greater engagement. Finally, we show the feasibility of the strategy by developing an implementation timeline and cost analysis. Therefore, through a mixed-method approach, we qualitatively and quantitatively provide support for personalized data comparison as a way for CF Canada to optimize patient/caregiver engagement in their new patient portal.