Katie Birnie shares the One Thing she wants people challenged by pain to know. Explore the current state of pain science research and clinical practice in this straight-to-the-point interview with Dr Katie Birnie.
About Dr Katie Birnie
Katie Birnie is an Assistant Professor in the Department of Anesthesiology, Perioperative and Pain Medicine in the Cumming School of Medicine at the University of Calgary. She is also the Assistant Scientific Director of Solutions for Kids in Pain (SKIP), a Canadian knowledge mobilization network that seeks to bridge the gap between current treatment practices and available evidence-based solutions for children’s pain through coordination and collaboration. She is a strong advocate for the partnership of patients and families in health research, health care delivery, and health systems design. Her research profile has more information.
Katie encouraged viewers of this video to look into the following resources:
Partnering For Pain website – https://www.partneringforpain.com
Birnie, K. A., Ouellette, C., Do Amaral, T., & Stinson, J. N. (2020). Mapping the Evidence and Gaps of Interventions for Pediatric Chronic Pain to Inform Policy, Research, and Practice: A Systematic Review and Quality Assessment of Systematic Reviews. Canadian Journal of Pain. https://doi.org/10.1080/24740527.2020.1757384
Transcript
So Katie, what’s the one thing you want people challenged by pain to know?
It’s such a good question, I mean there are so many things that are coming out in pain research and pain care at the moment. I think the one thing I’m really excited about right now is that I think the expertise of patients – people living with pain, and their family members – is really starting to be recognized as critical expertise we have to pay attention to as researchers, as clinicians, as policy makers. So, I think I’d want people to know: people are ready to listen and ready to partner with you to improve pain care.
I’m a pediatric pain researcher, so most of my work focuses on youth and children and families. When I think back to the origins of the field of pediatric pain, it really comes from the synergy between research and what I’m going to call lived experience of patients and families. That’s really how our field came to be. It was the coming together of critical research around early surgeries in infants. A mother whose premature born baby had heart surgery with no analgesics, and [there was] public outcry in the newspaper in the US. It was these things together that launched the field.
Then over time, as research happens in a more traditional way, there’s been less of that kind of partnership, less of that real synergy between research and lived experience. But I think that’s shifting. I mean, it certainly has shifted for us here in Canada. I’ve seen it in some of the conversations I’ve had with colleagues around the world, including in Australia and the UK in particular, but also in the US and other places. [These types of partnerships are] being asked for, it’s been required in grants. There’s greater engagement in policy, which for us here in North America has certainly come about through the opioid crisis. It’s really put pain on the federal government agenda as something we need to pay attention to. A key piece of that is people who are living with pain every day; that’s an expertise that the rest of us don’t hold.
What should someone with pain do? How do they get involved?
I think [how you get involved] depends what you do and where you are. I look out for patient organizations. I think there’s lots of phenomenal organizations that are led by people with lived experience. Chronic pain is interesting in that there are sometimes certain groups that are [based] around certain diseases or disease populations like arthritis, or irritable bowel disease, or Ehlers-Danlos syndrome. Then there are groups that are more focused on chronic pain in general, and we’re really starting to get into that space where research, advocacy, policy, and care, are starting to talk more. So, I think there’s opportunities to reach out to the clinicians that you’re working with, find out about researchers in your area, and see about getting involved.
I led a national patient engagement project where we partnered with youth and families across Canada as part of our research team. But we also asked hundreds of Canadian youth and families and clinicians across the country about their priorities for chronic pain research and care in Canada. We went through this James Lind Alliance process where you whittle it down to the top ten priorities. And what we identified is gaps; areas where people with lived experience want more information [and] want more changes in care to address it.
What shifted my perspective in partnering with patients and families is: how the questions are asked. I think they’re phrased differently. When I look at our top ten priorities from patients and families, we see questions that make a lot of sense, but they’re not how we frame research. As an example, one of the top 10 priorities is ‘what treatments best manage acute pain flares for youth living with chronic pain?’ That question is framed to help me solve this problem in my day-to-day life. In research, however, we often frame those questions as ‘what is x treatment helpful for?’ or ‘what do opioids help with?’ What matters from the patient and family lens is whether this will improve my life in some important way, regardless of what the treatment is. Is it going to address the problem that shows up for me in day-to-day life? I think it’s just a shift in how we address the problem. We’re not coming with the solution and asking whether it fits the problem. We’re coming with the problem and then asking, in an open-minded way, ‘What solutions are going to help address this problem?’ I think that important frame-of-reference shift is really going to make a difference in how we ask and answer questions from a research standpoint that are really connected to what matters to people who are living with pain every day.
Pain impacts lots of things, ability to work, ability to go to school, your family, your partners. What I think is really neat about what’s happening now is that best practices emerging in partnering with patients in this way include compensation. It includes a real valued recognition of the expertise that patients and families bring that you don’t have, even if you’ve worked as a clinician in pain for 20 years. Most – not all – but most [clinicians] don’t go home and live with pain every day. These practical challenges across the health system that connect from your family physician, to the pharmacist who dispenses your drugs, to trying to drop your kid off at school, to missing out on time with friends and family, to accommodations in the workplace, to the specialty clinic you visit… there’s just expertise in the day-to-day that patients and families have that pain experts – the way we traditionally think about clinicians or researchers – don’t hold. I think some of these practical things, like compensation, really enable greater equity and recognition of that expertise.
When we identified the top 10 priorities, there were more than 500, almost 550 ideas that were submitted as priorities for pediatric chronic pain research and care. Two of the top 10 pertain to school or vocational planning and education. This is an area that we have not done enough work in, in terms of pain care or pain research to support youth who live with chronic pain. And that’s just one of several examples.
So to me, partnering with people who have the expertise of living with chronic pain every day, it’s a game changer. It shifts the kinds of questions we ask in research and care. It shifts how we design services, if we let it, or really take it on in a meaningful way. I think that’s so important because chronic pain is complex. If there was one solution, I hope we would have found it. I always say that to families too, ‘if there was one simple thing, I hope no one’s kept it from you. I hope someone would have given it to you.’ I think we need to recognize the complexity of that and be open to doing things differently in how we design services and how we ask research questions. This means people have to talk. It means people have to recognize diverse expertise. And it means people need to be open to doing something different.
I really see my role now as a catalyst. What a privileged expertise to be able to do science, to be able to lead research projects, to be able to work within the health care system that is very disempowering for a lot of people who live with pain. I think we have a really privileged position that we can use well by bolstering up and creating a space to amplify the voices of people who live with pain, who we know can be very disempowered. I’ve seen the benefits of that. It’s also incredibly empowering to be part of projects that help redesign care for other people who live with pain, as a person who lives with pain. I think there’s so much opportunity to really change systems that we know don’t work for many people.
That’s fantastic, thanks so much for your time today.