Christine Chambers discusses the One Thing she wants people challenged by pain to know about. Dive into the current state of patient-oriented research in this straight-to-the-point interview with Christine Chambers.
About Prof Christine Chambers
Dr. Christine Chambers is the Canada Research Chair (Tier 1) in Children’s Pain and a Killam Professor in the departments of Psychology & Neuroscience and Pediatrics at Dalhousie University in Halifax, Nova Scotia. She is also the Scientific Director of Solutions for Kids in Pain (SKIP), a national knowledge mobilization network. Christine led the #ItDoesntHaveToHurt initiative, in partnership with Erica Ehm’s YummyMummyClub. She has also given a TEDx talk on children’s pain and developed a YouTube video for parents about how to manage needle pain.
Transcript
Christine, what’s the one thing that you want people who are challenged by pain to know about?
I think the one big thing I want people to know about is just the power of partnership. So, often in pain research and practice, people are working in silos. They’re working in isolation, whether they are scientists in a lab, health professionals working in a clinic, patients who are suffering with pain – I think the real the real magic happens when all of those silos are collapsed and people work in partnership together.
What does this look like? Does that mean patients become participants in a study?
I mean I think initially, you know, when the field of pain research was starting, that’s how we thought about patients: as participants in research. And over the last decade or so, there has been such a strong movement towards engaging patients more as equals in the research process. So, having patients drive research agendas, and having researchers actually engaged with patients, not just thinking about them as participants, but thinking of them as partners, which I think has really had a transformative impact on how we approach research and why we do research. And also, having an impact on transforming care, so that care is not just thought of as something that’s delivered to patients, but rather co-created and empowering patients. And so I think that’s really a difference in the sort of hierarchy of types of collaboration.
Yeah and so if there’s a researcher or clinician listening who wants to get a patient involved, how do they do that, and also if there’s a patient listening or someone challenged by pain, how do they get involved in this kind of partnership?
Right, so this move towards patient-oriented research and engaging patients as partners is something that, at least in Canada, has been really heavily promoted by the Canadian Institutes of Health Research’s Strategy for patient-oriented research. And so, in Canada we have support centers that are distributed across Canada that actually facilitate matching patients with researchers, and training and supporting researchers who want to engage and work with patients. Certainly in our own organization, Solutions for Kids In Pain (SKIP), which is a national knowledge mobilization network that is putting research into practice. We have a registry where patients can register as patient partners so that we can link them with activities and events and opportunities to engage. So I think there is increasingly more infrastructure to help facilitate some of this matching, but it is new in a lot of areas of research and is changing the way we think about how patients and researchers and clinicians work together.
Can you expand more on the benefits of why it’s important to do this? What’s the added benefit of having those silos broken down?
Yeah so my first experience engaging with patients as partners, as a researcher, was when we created our “It Doesn’t Have To Hurt” initiative. Really our goal in that initiative was to disseminate research findings to parents, but we wanted to do it in ways that parents were driving. And so through creating social media content where we had evidence weaved into social media videos and social media posts, it was quite interesting because Canadian parents drove the initiative, in terms of telling us what they wanted to hear about children’s pain, the scientists provided the background, but then we leveraged the power of parent’s social media networks to share. So through their empowerment in the project, Canadian parents became the primary disseminators of evidence-based knowledge about children’s pain. So that’s just one example of how I have been doing research on and seemingly for parents and families of children in pain, but it was the first time that I really asked parents to sit at the table with me and tell me what they wanted to hear about, tell me how they wanted to hear it, and engage their advice and support in sharing that.
Fantastic. And how far does this go: Do patients become co-authors on papers? Where’s their level of involvement?
Yeah I mean I think there’s no limit to how patients can be engaged. Yes, they can be authors on papers, they can be co-presenters at conferences – I think one of the best keynotes I ever gave was delivered in coordination with a patient partner, she and I shared the platform and you know we’re able to we’ve our narratives together. We’ve had patients advise on guideline committees and increasingly, even in the North American Pain School (NAPS) that I serve as assistant director of, we engaged patients as participants so that our research training could learn about the value of patient partnership in an early stage. So I think there’s really no limit to how patients can be engaged. Even some of my basic science colleagues I advise them like, “why don’t you invite a patient to your lab meetings?” At conferences, let’s have patients present. Patients can become judges of posters, and engage with research trainees and their research. That really helps get research trainees thinking about the power of working hand-in-hand with patients.
Yeah, great – where’s the next step for people? Where can people find out more about patient-oriented research?
Well certainly they can learn more about how we’ve been doing it in children’s pain research by visiting our Solutions for Kids In Pain (SKIP) website (kidsinpain.ca), and there are different opportunities to learn about patient-oriented research. In Canada I mentioned the ‘Canadian Institute of Health Research Strategy for patient-oriented research’. I’ll also give a shout out to Katie Bernie, who’s a new faculty member at the University of Calgary, who has been leading some really fascinating work called ‘Partnering for pain’, in which she’s had youth and families actually co- develop or co-design research priorities in the area of children’s pain. So I think there’s lots of good examples out there, and increasingly publications on how to properly compensate patients for their engagement in research, and how to acknowledge them as authors. This is a fast-moving field.
Thank you so much for your time Christine.
Great, thanks for having me.