Being involved in patient engagement helped Annette reflect on her work and its intended purpose

Transcript

So I would say that you know I was doing traditional research like most, you know where you have your own idea, you have your question, your PI, you assemble a team with different experts that relate to the project and you do the project and you disseminate in your traditional ways. But I would say you know once knowledge translation became a phenomenon in Canadian Institutes of Health Research (CIHR) in the last 12 or so years, through the School of Physical Occupational Therapy, through the – our school became very interested in knowledge translation. So I learnt more about it and how evidence, you know that we make sure that evidence is picked up and used by the appropriate target users.

So for many research projects, that could be clinicians or policy makers, but for some of the work that I’ve done in childhood disability, really an important target were families. So that’s when I began to consider the patient and more broadly the family, in terms of the research I’m doing and whether it’s meaningful or not to them. And whether the ways we disseminate the information is appropriate and meaningful and whether we actually did the project in a way that would best meet their needs.

So from knowledge translation I learnt about integrated knowledge translation which has that concept of involving the key stakeholders right from the start of the project. So that’s sort of the beginnings of my understanding of patient engagement. So I kind of understood conceptually but when I really jumped into the deep end of patient engagement was when I had this wonderful opportunity to co-lead with others, CHILD-BRIGHT, which is a Strategy for Patient-Oriented Research (SPOR) network on chronic diseases, one of the five big chronic disease networks in Canada. So here we’re focusing on children with brain-based developmental disabilities, so these are children with – could be a physical disability like Cerebral Palsy or a more developmental mental disability, like a learning disability or attention deficit disorder. Or has more psychosocial elements like the autism spectrum disorder.

And so when we think about patients, we use the CIHR definition of patients, which is not only the person who’s directly implicated with the healthcare system, with the chronic condition, in this case a brain-based developmental disability, but we’re also including the caregivers who really are really key to that experience.

And because our patients are – many of them are either too young to really participate actively in research as patient partners, or they may have communication challenges or cognitive challenges, for us the important patient partner are the parents. So in CHILD-BRIGHT, when we started to think about what are we going do the research on, so this was when we were writing the grant application, we brought together key stakeholders, so this was youth and young adults with disabilities, parents, policy makers, clinicians, researchers in the field of the disability, childhood disability, and we met twice in face-to-face meetings. And we came up with priorities, and we’re very influenced by parents and the youth in terms of where they felt research should be prioritised.

Then we were fortunate to get funded, we had amazing funding partners, so those are important as well to acknowledge –because for this project we get $12.5 million from CIHR but we had to raise $12.5 million of matching funds. So, particularly the Children’s Hospital Foundations across the country were important partners. So then in doing the projects we expect the projects to involve patient partners in all aspects of the research. So as one of the leads of CHILD-BRIGHT our role is really to help support patient engagement. 

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