Diabetes Action Canada is building a Digital Patient Engagement Network
Our Patient Partners, who live with T1D, have made it very clear that they feel disconnected from current clinical trials, researchers and research outcomes. In parallel, researchers struggle to connect with this diverse and geographically dispersed population. This disconnect is an impediment to recruitment to clinical trials and research, thereby hindering scientific advances that could greatly inform treatment pathways and improve health outcomes.
To bridge this gap, the Diabetes Action Canada iT1D Program is developing an opt-in digital platform for the purpose of recruiting, contacting and regularly engaging persons interested in contributing to clinical research to accelerating scientific advances that could greatly inform treatment pathways and improve health outcomes in T1D. At time of registration those living with T1D will be asked to complete a very short questionnaire to determine their demographics, location and research interests as well as provide consent to be contacted for clinical research opportunities. Once enrolled, those living with T1D can explore clinical research opportunities and provide their opinion to help set targeted research priorities that address their specific needs. Conversely, researchers will be able to directly engage members of the T1D Community in clinical research opportunities and in determining research questions for patient-oriented research projects. To makes this platform truly patient-centred we have undergone an extensive co-design process with members of the T1D Community, which included large workshops with the T1D ThinkTank and Diabetes Action Canada Patient Partners, smaller working groups and one-on-one interviews. This rigorous co-design has led us to a product that will present clinical research information in an easy to understand dashboard that presents information in a way that is easy to interpret and easy to determine if a clinical research study is a good match for the user. The design of this digital patient engagement network, soon to be renamed, is nearly complete with an expected launch date in Q1 of 2020