Building a Type-1 Diabetes Engagement Network
The iT1D Program is currently developing a Canadian specific T1D digital patient engagement network (with proof of concept in Ontario) that will serve two initial purposes. The first is to demonstrate the efficacy of an electronic consent (eConsent) process for persons to provide patient-reported data for the purpose of recruiting, contacting and regularly engaging individuals interested in participating and contributing to clinical research. The second is to create a digital patient and provider communications network to enable a forum for those living with and working in T1D opportunities to connect with their peers and each other in a digital environment. Researchers can use this forum to gather patient input on setting research agendas. Persons living with T1D will be able to engage the community for peer mentoring, experience exchange, and education. Taken together, the T1D Patient Engagement Tool and a digital network will provide an opportunity that currently does not exist in Canada, to learn from patient experience and build a shared understanding of life with T1D.
iT1D Patient Engagement and Collaborative Insight Session with the T1D Think Tank Network
Our Patient Partners who live with T1D were instrumental in shaping the direction of the T1D digital patient network. Dana Greenberg, Marley Greenberg, Richard Piché, Pina Barberi and Kate Farnsworth actively participated in the Steering Committee and its working groups, to create the initial plans for this project. It was at their request that the T1D digital network provides opportunities for those living with T1D to enroll themselves through a simple web-based registration and within the digital community control their engagement level with researchers. Their input changed the trajectory of the project towards a digital solution that would meet the needs of both researchers and the T1D Community.
During the process of planning the T1D patient engagement network, it became clear that for our research program to achieve success a stronger connection with people living with T1D must be established. With this in mind, it seemed a natural fit to collaborate with the Type-1 Diabetes Think Tank Network (T1DTTN) to learn from patient narratives and understand their experience in healthcare and quality of life. On November 30th, 2018 Diabetes Action Canada and the T1DTTN came together to hold its first collaborative activity called an Insight Session. This event was a full-day workshop that brought researchers, health care professionals (HCPs), people living with T1D and other stakeholders together to learn new skills in communication, share experiences and discuss research conceptually and projects in progress. The event started with a story-telling workshop that provided a framework for communication that was used throughout the event to share personal and research experiences, build trust and create mutual understanding. Participants in the session were invited to share their stories in small and large groups throughout the event. Researchers presented their research projects – both funded and proposed – using the story-telling framework, and gathered feedback from the group digitally (using live polling) and verbally. The T1D patient engagement network was introduced to the audience by Dr. Shivani Goyal (Diabetes Acton Canada co-investigator) and a draft prototype was demonstrated on mobile phones. Each activity was followed by a larger group reflection and sharing, that guided a more fulsome discussion with ideas and feedback building on individual comments. Both positive and critical feedback was received and it was very clear to researchers that the T1D community must be heard when planning research and feel empowered by their participation in research. Overall, the participants enjoyed the opportunity for open and honest communication between people living with T1D and those investigating the disease. Participants were inspired by the personal stories and found them an effective reminder about the difficulties faced by those people living with T1D. A graphic summary (below) was prepared throughout the day to capture the key points and discussion and a summary video is currently in production and expected to be completed in the near future.
Diabetes Action Canada and T1D Think Tank Network Insight Session participants.
A full report on the event is available on our website here
The iT1D Goal-Directed Program is currently conducting six clinical trials with a team of 13 principal investigators and co-investigators from three provinces – Ontario, Quebec and Manitoba – investigating innovative therapies to treat and improve the lives of those living with T1D. These studies include patient-oriented research studies evaluating new therapies in diabetic neuropathy, artificial pancreas, adjunct drugs and immunotherapies.
This year the iT1D Research Program was able to participate in a ‘first of its kind’ CIHR SPOR Innovative Clinical Trial (iCT) multi-year operating grant competition, with funding matched by the JDRF. This competition not only focussed on designing innovative clinical trials to reduce the burden of continual self-management of persons with T1D, but also had a large emphasis on patient engagement in designing these trials with outcomes that will be accessible and directly applicable to their direct health concerns. Of the eight applications that went forward in this competition, three were funded to a maximum of $3,000,000 over 4 years.
To learn more about these trials you can visit our website at http://diabetesaction.staging0.com/clinical-trials/