“Your experience… is a unique experience.”

So I just started with SPOR, which stands for Strategy for Patient Oriented Research… I guess the end of May this year. And I’m the patient lead for the patient engagement platform. So the role of that platform is really to encourage patients, families, caregivers to get more engaged throughout the research process. And my role as patient lead is to bring a patient experience, patient voice to the work of the platform.

So I have a son who’s just turned 25 who was born with really complex medical issues. Back when he was quite young, I got very involved at the children’s hospital here in Calgary, sitting on [a] patient advisory committee, etcetera. Really felt it was important that families worked with health professionals to try and design services in a way that would actually meet the needs of kids and families.

In our circumstance, because Sam’s issues were so complex and he required multiple surgeries starting from the day he was born, we had intense interaction with the health care system. Being sort of thrust into that role as a parent of a child with very complex medical issues was a very different way of looking at the health care system. And I began to realize that often the way we do things in the health care system can be a bit difficult for families.

Partly because of my experience with Sam… when he was about six years old, I decided to go back to school and do a PhD myself. I was very interested in the concept of patient- and family-centric care and went back and did my research in that area. I really wanted to understand more, again, how we could advance our understanding of what do health services look like that really, truly meet the needs of children and their families. And also how can we get children, families, youth more involved in designing health services that meet their needs.

Often I think, patients and families, they don’t think they have very much to offer. But I think often as a society in the past, we haven’t really thought that patients and families bring, like, that lived experience of… is a valuable kind of knowledge that’s important for research. But I think we’re recognizing that more and more.

And I think that I would say to patients and families that your experience living with whatever health condition you have is a unique experience. And that the researchers maybe don’t have a good understanding of that. By bringing your knowledge to the table, along with the knowledge of the researcher, together we can develop a research project that is potentially more likely to have an impact, a positive impact on patients and families. And I think patients and families get really excited about that.