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Connect1d Canada Community Advisory Committee (CCAC)

Connect1d Canada Community Advisory Committee (CCAC)

Why do we need governance?

For years, research in Canada has been done with little or no consultation with those living with the condition being investigated. At Diabetes Action Canada, all projects must involve the patient perspective and practice patient-oriented research. This means those who live with diabetes need to be engaged to ensure research planning is relevant to the community and produces meaningful results for improving the health outcomes of those living with diabetes.

The Connect1d Canada Community Advisory Committee (CCAC) will support decisions related to how the Connect1d Canada project is managed, how participants and staff are protected, and how accountability is assured. As Connect1d Canada grows, the CCAC will ensure the project meets the needs of the T1D community. This includes helping to develop a strategic roadmap, supporting patient engagement activities, and advising on areas such as research study recruitment and sustainability planning.

Full plan is here:

CCAC Governance Plan

Why do we need governance?

The key questions the CCAC will address are the following:

  • Do our future goals align with the mandate of Connect1d Canada and the needs of the T1D Community?
  • Do we have the right people engaged with the platform at the right time?
  • Are users (both researchers and citizens) using the platform to its full potential?
  • How can we better engage those living with T1D from across Canada?
  • Do the benefits of using the platform for research recruitment outweigh any risks for the participants?

We are currently recruiting for the Connect1d Canada Community Advisory Committee (CCAC) to advise the operations and management team on future directions to ensure that Connect1d remains a patient-driven platform.  To see the full governance structure for Connect1d Canada see figure 1.

Figure 1: Proposed governance structure for Connect1d Canada. For the purposes of this page, we will focus on the CCAC in this structure. The Connect1d Canada Steering Council will be established once the platform has a working CCAC in place.