Table 4 Summary of results

1. What was the experience of leading, managing and participating on the MCA councils?

Leading, managing and participating on the MCA councils was characterized by evolutions, which transpired in three distinct ways:

(1) Shifting from an uncertain and unclear direction to concrete direction:

We’ve moved from uncertainty and this vague objective to actually coming out with some very concrete and strategic directions. —MCA council co-chair

(2) Better integrating the voice of PWLE:

I feel like now when we’re in conversation or we’re discussing this, everyone is just coming from a place of wisdom, not necessarily their role or their expertise or like it just feels like we’ve come to a much richer place because I think we’re listening to each other more fully and we are all sort of really listening for direction without worrying so much about the work we’ve done in the past or the experiences we’ve had in the past. —MCA council member

(3) Increasing cohesiveness within and across MCA councils:

We had created six bodies that would effectively reinforce that… It would cement the walls that we want to break down because people’s experience of health is holistic, yet the system is incredibly fragmented, and by having a process that was by definition fragmented in six groups, there were significant risks, so I said I’m quite happy to have six tables, but I want to make sure that the process will involve a chance for the six tables to come together, and I want to make sure that at the end of the day, the big priorities that come out are transcending. —Key informant 1

2. What were the challenges resulting from this approach to engagement?

A combination of smaller, logistical challenges were amenable to change, while others were more difficult to resolve completely. They included:

(1) Managing the councils and its membership:

…months going by and they weren’t as engaged. So to get them back engaged, that also takes time, and you’re also shortening a timeline period. —MCA council co-chair

(2) Lack of organizational structure in place to support the initiative:

… a very complex process in an organizational context that didn’t have the foundation to really support it. —H&S team member

(3) Terminating the MCA councils:

In year 2, we were very clear that this was the last time they were meeting as individual councils. And we really were like, you know, the mandate is ending, we gave lots of forewarning you know. Whether they really heard it or not or really believed it or not is always a different issue. —H&S team member

3. What were the outcomes arising from this approach to engagement?

Taken together, the MCA council process generated greater than expected outcomes at three main levels:

(1) The MCA councils:

We are very different people, we’ve been brought together but with very different perspectives and experiences. So I think that’s what makes it very rich, to bring all those people together who have very different, may have very different perspectives. —MCA council member

(2) The H&S:

…growing out of our Mission Critical Area councils but also kind of spreading our intent, our message, and kind of our voice in a global context. —H&S team member

(3) Canadians:

bring things together at a level that the focal point being disease areas that are broad, large and are well understood, in particular, by the public —MCA council co-chair