Annette’s team developed a guideline with honorariums rather than hourly rates
Transcript
So that voice is right in all elements of what we’re doing in the network, which is really important. Also on our network steering committee we have two parents, so that really is guiding, steering the running – the functioning of our network. But in terms of strategies, one important strategy is financial compensation and as researchers it’s part of our job to do research, it’s like we’re paid to do this and so whatever we do, we have a salary for that. So it’s important to compensate patients in their efforts, whether it’s being on committees or part of research teams. Or sometimes they represent us in different events or media or whatever, so in a way that they are partnering with us and giving up their time, we feel it’s important to compensate that.We didn’t go the route of an hourly rate because it’s complex to do that. But instead used honorariums and came up with guidelines which are available online –
And I think that’s a work in progress; like we started, we looked at the guidelines of Canadian Institutes for Health Research (CIHR) in all, like UK and other organisations that have guidelines available. But we also wanted to consider the unique perspective of child and family and the needs – differentiate the different needs that we had in the network that patient partners can play a role in our research project but they can also be on committees, they can be at events, they can attend our annual meeting. You know sometimes it’s not only on an honorarium for their time on a committee, but it could be things like reimbursing for babysitting costs so they can attend the annual meeting, or things like that. So Citizen Engagement Council has been really instrumental in helping us build that guideline which we continue to go back to and add further elements as we discover different ways that patients are engaging with us. So that is very transparent and we reimburse patients every six months, so that’s a regular and it’s very clear to everyone what we do. So I think that’s really important.
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