Connect1d is a patient-driven digital platform that allows those with type 1 diabetes (T1D) to easily learn about innovative treatments from across Canada, while contributing to research in the areas that matter most to them. Connect1d also allows researchers to easily engage people living with T1D from across Canada, enabling rapid recruitment of diverse patients into research studies.
The idea of Connect1d was sparked early in the initial funding term of Diabetes Action Canada, when two major challenges in type 1 diabetes research became glaringly apparent to our organization. The first was in how researchers recruited for clinical trials, or rather struggled to recruit for clinical trials, as no systematic process was in place to identify and engage those living with diabetes, leaving some studies recruiting for years. The second was in the data and how information about those living with T1D in Canada was very hard to decipher from other data on diabetes. These fundamental issues have impeded the ability of Canadian researchers to create innovative treatments and management strategies.
In it’s original iteration, Connect1d was called the Diabetes Action Canada T1D Registry and was more about gathering information from those willing to donate their data for research. With this, we began our patient engagement journey and quickly learned this was not enough to inspire those living with T1D to participate. It became clear that for this platform to become successful, the users would have to own their experience and involvement in research. They would need complete control on what data is collected, how it is used and who can use it. In return, those living with T1D would see research studies that are recruiting participant in a simple, easily digested manner so they can decide if a study is right for them and their research interest.
After two years of development and extensive patient engagement activities, including workshops, focus groups and one-on- one consultations, Connect1d was launched. Connect1d as we see it today, is a digital platform that collects information about the lived experiences of those with T1D through user-reported data in a transparent and customized manner so users have complete control on what information they would like to share, all while volunteering for research studies that match their research interest and eligibility. Researchers, in turn, are given an opportunity top accelerate recruitment with access to a diverse group of participants. Furthermore, as patient-oriented research becomes more prevalent, researchers already involved with Connect1d have a competitive advantage in the patient and public engagement strategy.
Connect1d today, is by no means finished, but rather just starting as a journey for both those living with T1D and those researching the condition, to accelerate innovative research and get Canada on the map as a leader in connecting citizens to researchers.
Patient Engagement Journey
Summary graphic for the Diabetes Action Canada and The T1D ThinkTank Collaborative Insight Session.
*Graphic created by Erica Bota from Think Link
Summary Video of iT1D and T1DTTN Collaborative Insight Session