How should we learn about pain?
From continuing education for health professionals to 'patient education' - are we too focused on 'educating' and not focused enough on learning?
In my last post I wrote about our Trauma and Pain session at the Canadian Pain Society Annual Meeting last year. It was an awesome session. But what was even awesomer was the pre-conference gathering Dr. Melanie Noel organized for colleagues and members of her lab.
Mel saw Keith Meldrum and I speak at the San Diego Pain Summit in 2020 literal weeks (days?) before the world shut down because of Covid. She wanted to bring that sort of discussion - centered on lived experiences of pain and seeking care - to her students and collaborators.
Meldrum (we both have fire service backgrounds, so last names it is) has been my partner in so much of my advocacy work. We met through pain and were kindred spirits from the jump. I never have to lie to him, never have to keep up appearances, can fall apart if I have to, can rage against the machine in endless text threads to him. We’ve dealt with some BULLSHIT together in our advocacy work. And I can tell you truly that I would not still be doing this work if not for him, his friendship, his support.
Also, he’ll call me out on any of my own bullshit. We all need that person!
Mel, Meldrum and I roadtripped from Calgary to Banff together to chat about what we wanted this pre-conference gathering to look like. To be discussing big ideas and hard topics with people you love and respect is just so damn good. It nourishes the soul and energizes the hard work that has yet to be done.
We wanted that to carry that love, respect, nourishment, and energy through to the entire group. We thought maybe, just maybe, that would be a better way of learning more about pain and trauma than data or presentations or slideshows. And what started as a pre-conference workshop about the lived experience of pain became about so much more than just Meldrum and I sharing our stories and ideas and hopes and humanity.
It became a gathering. A place and space that enabled ALL of us to share our stories, ideas, hopes, and humanity so we could learn from and with and alongside one another.
Flipping the education script
Rather than sharing our stories and fielding questions, we flipped the script a bit and started off by asking everyone in the room why they were there. What drew them to researching pain or trauma (or both)? We wanted to know their why. It’s so rare to actually hear from researchers why it is they’re interested in what they’re interested in. It shouldn’t be! It’s so friggin’ interesting! And relevant!
We sat in a circle, no hierarchy, no titles. The question was the same for the first year grad student and the late career researcher with decades of study under their belt. There was no format. People could answer however they wanted, reveal as much or as little as they wanted, say whatever was right for them in that moment.
Asking why everyone in the room was interested in pain led to the most meaningful discussions about pain research I’ve ever been a part of! The artifices - and limitations - of academia fell away.
We talked about hard things, deeply and personally, without judgment. We talked about pain, trauma, being human. We had the space and breadth and depth and support and validation to explore why we all are pursuing the things we are pursuing, what we hope to see in the pain community and pain research and pain education, as well as in society and the structures and systems we are all a part of.
And there was champagne! And then bowling! And we kept the conversations going.
There were tears and laughter, anger and hope, insights and epiphanies, and connections between ideas and experiences and people that may have never been made otherwise. Together we got to ask hard questions, identify problems to interrogate, and explore possible solutions.
No one had all the answers. All our ways of knowing pain mattered. It was co-learning at it’s finest. And shouldn’t the learning bit be at the center of education, not the educating bit?
Why isn’t that what continuing ‘education’ looks like?
It was incredible. And I kept thinking this is what pain conferences - or ‘continuing medical education’ - should be.
No more death by PowerPoints and ‘you probably can’t read/see that [incredibly detailed graph or table] very well…’ No more research presented as though ongoing pain is some abstract academic problem to solve and not a real life human experience that upends lives and selves and families and communities.
You probably don’t always need champagne and bowling to make for good learning experiences, but don’t rule it out, either.
Who gets to be a part of ‘education’ about pain?
So often - most often - people who have lived with pain aren’t asked to share their knowledge and expertise, their ways of knowing pain. People with pain are not asked to present at pain conferences, or to be faculty, or to contribute to continuing education endeavors. Usually were not even allowed to attend, let alone take part in the workshops, poster sessions, debates.
This makes me pause - if people with pain don’t matter when it comes to teaching about pain - what are we doing all this research for?
Pain comes with moral values attached by which people in pain are judged, often unkindly, to be at fault in having a pain problem or in failing to overcome it. Only by deepening our awareness of these difficulties, eloquently articulated by people with persistent pain, and incorporating them into our theoretical models and practical interventions, will we be able to provide better treatment for more of the millions of people who live with pain.
Amanda C de C Williams, foreward, Pain: A Textbook for Health Professionals 3rd Ed
People with pain aren’t allowed to be members of most professional pain societies, either. Even when we work as partners in pain research, health systems strengthening, policymaking, and treatment and medicines development. Even when we lead our own non-profits, or our own research. Even when we’re on advisory boards, scientific program committees, working groups, task forces, and guideline development groups.
Now that’s some bullshit.
This is changing, although not nearly fast enough
People who have lived and living experience of ongoing pain are being asked more often to present at conferences, in classrooms, at board meetings, before governments. This is important. It is an excellent first step.
AND…just plugging us in to current ways of providing pain education for clinicians and researchers, which were not built with the people actually living with pain in mind, probably isn’t the way to go about it. It can even be harmful.
Sue Robins regularly asks the important question ‘are you using patients for their stories?’ and shares red flags for people with lived experience who might be asked to share their stories on stage - and when they can - and probably should - say no. Her reminders helped me stop telling my own story at a time when I definitely needed to.
Our stories, our experiences, are crucial to understanding pain. Our stories are also not all we bring to a collaboration. Our lived ways of knowing pain are invaluable for many reasons, and our contributions don’t always have to involve reliving our pain, our trauma, our suffering.
An excellent second step would be not to just invite us to tables that currently exist, but for all of us to come together and build some new damn tables. Pain conferences and continuing education for pain professionals don’t have to be done in the ways they’ve always been done.
If what we’re doing isn’t it, what should we do instead?
How would you prefer to learning more about pain? Whether you’re a person with pain, a researcher, a clinician, a coach, a policymaker, a health systems administrator, a member of society - what do you want to know about pain and how do you want to learn it?
When you do go to conferences or workshops or seminars are you getting what you want out of it? What do you remember most when you leave? Was it that one table you couldn’t read because the font was too small? That one graph with 47 colored lines but only the light teal one mattered (or was it dark teal…)? What do you wish there was more of? Less of?
I’m not saying research - and the data that results from it - isn’t important (although some of it isn’t). I’m just saying that data can come from many sources and can be contextualized and shared in many different ways. RCTs have only been around about 80 years (thanks for that tidbit Adam Mastroianni), maybe we should explore some of those other ways, eh? And (I hope that goes without saying at this point) those other ways need to include and be co-designed with communities and people with lived and living experiences of pain.
Not only can we do things differently, folks already are doing things differently! Yay! Like the San Diego Pain Summit (next one is the first weekend in March!) and others who have been inspired by it like the Oregon Pain Summit (where I emceed with Michael Falcon last October) and Utah Pain Summit (May 3-4th).
What about pain ‘patient education’?
When it comes to pain ‘education’ for patients (scare quotes because ‘educating’ people who live with pain about pain is pretty friggin audacious!), Joost van Wijchen and I took a different approach in our chapter for Pain: A textbook for health professionals 3rd edition. We stress that not only are there things people with pain can learn from clinicians and health professionals (that’s why we seek you out!), there are also things that clinicians and health professionals can learn from people with pain, both inside and outside of the clinic.
Collaborating with Joost was good fun. He is radically challenging and changing how education is conceived and delivered for physical therapy students in Norway (which he’s done previously in the Netherlands).
I’ve learned so much from him about why and how we can make education more about the learner. About teaching in ways that are more collaborative, where the learner also teaches and the teacher also learns. Rather than me telling you what you need to know (or vice versa), we identify what we would like to know together, and then work together to co-construct solutions, outcomes, and knowledge that is appropriate for our particular situations, contexts, and needs.
We created a table (I’m such a hypocrite! Is the font too small?…) on different frames to consider pain education through. Reflecting on any one of them - or all of them or bits of them - can shake up the way we teach and educate and - hopefully - learn.
What frames to you currently use when it comes to your own education or learning efforts? Are they different when you are a teacher vs a learner? How do you bring together all you know and put that knowledge into practice? (Joost introduced me to mindlines, introduced by John Gabbay and Andrée le May in 2004. I still have much more to learn!)
Learning alongside one another
We positioned our chapter as the start of a conversation about pain education, not a definitive conclusion. We want to spark reflection and discussion, and move us a bit more to the likes of our pre-con in Banff. What if education about complex human experiences - like pain, like trauma - was more about our shared humanity and making sense of hard things together? About bringing together our unique education, training, and experiences - yours and mine and ours and theirs - to co-create a narrative that makes biological AND biographical sense for folks living with pain?
Below is another table we created on pain education in practice. I’ve changed patient-led to person-led, as I think this could apply to more than just patients. I think this what we did in the pre-con. It didn’t matter if identified as people with pain, trainees, early, mid- or late-career researchers, clinicians, or by more than one of those labels.
Maybe this is just how we should do education? Learn from, with, alongside one another? Bring together all our unique perspectives and ways of knowing pain (or trauma or whatever complex topic) together to see what makes the most sense?
What do you think? What works? What doesn’t? What’s missing?
We can take bold steps toward change
This was the first edition of this textbook to include a chapter on pain education for patients and the first chapter co-authored by a person with lived experience of pain. I’m grateful for this bold step by the editors Hubert van Griensven and Jenny Strong. If you’re in a position of power or in a decision-making position, you don’t have to wait to make bold decisions of your own.
I hope Joost and I provided a chapter and critique that provokes reflection and reimagining of what pain education for patients (and humans in general) can look like. But the thing I loved most about writing this chapter was that my contributions weren’t about my lived experiences of pain and seeking care. That was just the background I brought to the research and writing. I was invited by Hubert and Jenny to the work as a scholar, just like all the other authors who were invited to contribute to the textbook.
Of course my lived experiences color and shape my interests, research, and scholarship, but that’s true for all of us, not just those of us identified as ‘patient partners’ or ‘persons with lived experience’.
We bring more than our pain to our work. Just like everyone else!
As always, thanks for being here.
I’m curious your thoughts on any of the questions I’ve posed here. Or on education or learning or teaching in general. Or really just anything! One of the ways I learn best is through dialog and discussion, so lets dialog and discuss! And if you think I’m way off the mark, lemme know that, too (kindly, please).
Just a reminder that the San Diego Pain Summit is in two weeks (March 1st-3rd). If you want a different kind of pain conference, this one's for you! Mel and I will facilitating an interactive workshop on Validation in the clinical encounter that will be focused on learning, not educating ;)
You can sign up to attend in-person (see image below!) or virtually.
Owning my own shit
I am currently in the process of putting together some PowerPoints for pain conferences. It’s a crutch. As much as I want to say NO MORE POWERPOINTS - I REFUSE! I fall back on it because it’s comfortable. And as a person wtih lived experience presenting at a pain conference, I don’t know how ‘different’ I want to be.
I want so badly to be seen as ‘legitmate’, so I share research citations. A part of me still wants to fit into those stifling boxes of academia and be respected and accepted, even though I know I never really will be because I’m not really of that world. (Although I know plenty folks in that world that feel the same way. I see you!).
I want to counter the ‘it’s just your opinion’ or ‘she’s just a patient’ or the refrains that I’m too angry, too emotional, take things too personally.
Damn right I am! Damn right I do!
Because I am angry. No one comes to advocacy and activism because they’re happy about the status quo. And it IS personal. The more we abstractify and objectify pain when we ‘educate’, the more we forget that it’s real ass people we’re talking about here.
So I’m working on it. On just owning my own damn self.
Let’s get radical, y’all. Let’s burn the wheel.
Though the first clinical trial was recorded in 1747 by Scottish physician James Lind, who found that oranges and lemons added to diet led to cure from scurvy in Royal Naval sailors. 20 May is international clinical research day as a result. (Combining my Scottish, medical, research, and naval backgrounds for that fact).
Brilliant Jo. What a wonderful experience you had and your ideas for learning together are spot on! We can make so much more progress when we are collaborating and learning from each other, not being excluded because we are not considered worthy enough to be at the table. We are not being included as we should be and part of that is that we cannot afford the enormous cost of attending conferences. We need to keep up with current research too! I will add that this is not universal. Some people/orgs are very keen on including people with lived experience in many different areas of endeavour. Much love ❤️