The momentum is growing...
The momentum is growing...
From integrating lived experiences of pain to lived experience leadership
Hello pain peeps! I realize I haven’t taken the time to properly welcome and thank all the recent subscribers to MyCuppaJo - I’m stoked to have you here. Since I’ve joined Substack the subscriber count has more than doubled from my blog - how friggin’ amazing is that? I’m always blown away that people want to read my stuff (and also sort of terrified that people will actually read my stuff - I suffer from publish paralysis with every dang post).
And for those of you who’ve been here since the good ol’ Wordpress days - whoa! I’m beyond stoked, and grateful, you’ve stuck around. Thank you all so much.
A recent LinkedIn post by Maria Hudspith got me thinking I should share a post on the momentum we’ve built in recent years around the integration of lived experience into pain research, education, policy, and treatment. I figure it can also serve as an update on what we’ve been up to in this space, as well as an intro to what we do in this space.
The momentum is growing. Increasingly, researchers are engaging people with lived experience as partners, collaborators, co-authors and mobilizers of knowledge. ~ Maria Hudspith, Pain BC
She wrote the post to hype the upcoming PxP 2024, a conference FOR patients, BY patients on patient engagement in health research. It’s September 10-13, is online and FREE - sign up here - and anyone interested in integrating lived experience into health research is invited.
I had the good fortune of being on the 2023 steering committee for the inaugural PxP, which was a huge success, and which I got to present on today at a Science of Team Science conference with Alex Haagaard.
The title of our talk was ‘Beyond Co-Production: Patient Partners Leading with Researcher Allies Supporting Them’, where we shared how we can beyond patient and public engagement and involvement in health research to research that is 1) led by people with lived and living experience of the health conditions being researched and 2) supported by institutions and institutionally affiliated researchers and health professionals.
It was excellent timing as, earlier this week, our article on Co-creating and hosting PxP: A conference about patient engagement in research for and by patient partners was published. Hell yeah! (The QR code in the image above will also take you there.)
Our session was a success, with lots of great audience questions and discussion. We were part of a larger block on team science and community involvement, and all four presentations were very complementary and linked nicely together. It was great to be in this new (to me) world of the science of team science, and think all of us who are interested in patient/public/lived experience/community involvement in research should get more hip to it.
The awesomest thing, though, was thinking about Maria’s quote and realizing we weren’t presenting on why we should involve people with lived experience in research. We didn’t need to justify it, or explain what it is, or expound upon why it’s beneficial. It was a given during our block of four presentations. The coolest friggin’ part, though, was that we were presenting on lived experience leadership. Not engagement, not involvement. Leadership.
The PxP Conference showed that patient partners can lead. We were able to successfully design and execute, and continue to build upon, a successful initiative when given full control and resourced appropriately by an institution and institutional leaders who were willing to share power.
This was the conclusion of our talk. Mic drop!!
I want to give a huge shoutout to Karim Khan (the institutional leader), the Scientific Director of the Institute of Musculoskeletal Health and Arthritis (IMHA - the institution), part of the Canadian Institutes of Health Research, Hetty Mulhall (Associate Scientific Director), and Dawn Richards (patient engagement extraordinaire/consultant and magic maker) who made this possible through power-sharing and putting money and resources where their stated values are.
Whew! Look how far we’ve come!
I started my blog way back in 2013, trying to make sense of my experiences of pain and trauma and the hell that was work comp and life after retirement from my firefighting career and just figuring out this whole being a human with chronic pain business.
In 2015 I went to the San Diego Pain Summit and met some good pain folks and learned some things and kept going back until the last hoorah this year. I was a ptient demo for Pete O’Sullivan in 2017 and started sharing my story at conferences and in classrooms in 2018, including the 2018 IASP (International Association for the Study of Pain) World Congress.
In 2019, I published my first two textbook chapters, Exploring the Meanings of Pain: My Pain Story, in Meanings of Pain, and The Lived Experience of Pain, in Yoga and Science in Pain Care: Treating the Person in Pain.
That same year I became co-chair of IASP’s Global Alliance of Partners for Pain Advocacy (GAPPA), and the very first Patient & Public Partnerships editor at JOSPT (Journal of Orthopaedic & Sports Physical Therapy). My first paper in the patient and public involvement space was in JOSPT that same year, titled Patients as Partners in Research: It’s the Right Thing to Do. We were very much proving the case for integrating lived experience into musculoskeletal health research.
We’ve made massive progress since then
As I started to compile the examples of progress, I realize there is too many for a single blog post. Who the heck knew that would happen in just five years!
It is a good and necessary reminder for me, as sometimes all I see is that we aren’t moving fast enough, that there are still barriers to blast through or work around, still systems to challenge and upend, still minds to change, still inequity and injustice, still a fight to be fought, still tokenism and bullshit, still still still still still….
All those things are true AND we’ve made progress AND we have momentum to keep making necessary change.
Since 2019 I have co-authored four more textbook chapters on things like Pain Education for Patients (in Pain: A Textbook for Health Professionals) and Communication in healthcare settings.
I’ve also co-authored a pretty friggin’ awesome (and popular!) paper with Tamar Pincus and Hollie Birkinshaw on Patient-centered Consultations for Persons with Musculoskeletal Conditions, and a pretty friggin’ qualitative synthesis with Fran Toye, A Healing Journey with Chronic Pain.
Over at JOSPT we published a paper on Harnessing People's Lived Experience to Strengthen Health Systems and Support Equitable Musculoskeletal Health Care. In PAIN, my GAPPA co-chair Blair Smith and I published Patient engagement in pain research: no gain without the people in pain. I was somehow also on the WHO Guideline Development Group for the recently published chronic low-back pain guideline.
The view from right here
In 2022 I stopped telling my pain story. For so long I felt like I had to tell my story. That it was desparate. That I had to prove to people we were worth listening to, prove that people could learn from us, prove that our lived way of knowing pain was valuable and valid, prove that it could be integrated with the science in meaningful and actionable ways. I had to prove prove prove for so long. Scream and shout and yell just to be heard, to be noticed, to be included.
We still have to do a lot of proving and shouting, but now there are so many people listening. So many people fighting for the same things - for equity, for justice, for inclusion, for learning from, with, and alongside people living with pain. I don’t feel like we’re always screaming into the void now.
And now, in 2024, we just gave a presentation on patient partner/lived experience leadership. On how institutions and researchers and health professionals can share power, or even cede power, and it can lead to successful outcomes for all of us.
Not only that, now, in 2024, I am a part of a consumer/lived experience-led research team. Not just a part of it, a part of the leadership within that team. There will be much more to come on this, so stay tuned.
For now, though, in just a few days I will be at the 2024 IASP World Congress on Pain. I’m presenting with some amazing folks for the Methodology, Evidence Synthesis, and Implementation SIG symposium as a member of the ENTRUST-PE Network. We’ll be exploring how to build trust in pain evidence.
The awesome thing is, I’m there to present on how patient and public partnerships build trust in pain evidence. I’m not there to tell my story to demonstrate why it’s valuable to learn from people with pain, that’s a given. I’m not there to talk about if we should partner with people with lived experience of pain, that’s a given. And I’m not there to justify why we’re including partnering with people with lived experience in this framework for trustworthy evidence. It’s a given.
(For more on why all this matters, though, check out this podcast from IASP’s Pain Reserach Forum with my brother and partner in all things whatever it is that we do: The Impact of Patient Voices in Pain Research: A Conversation with Keith Meldrum)
Pshew!
Boy, how far we have come since I had to plead and beg and shout that this was important, just hoping one person in a room would say yea, that makes sense.
That’s exciting. AND we have a long way to go and a lot of work to do. Yet I have so much more hope than I did five years ago, two years ago, six months ago.
How about you? I endlessly ride waves of both hope and despair, so if you’re not riding this hope wave with me right now, that’s okay. I want to hear where you’re at, what you’re feeling, where you want us to go, what you want us to do.
I’m jazzed from this presentation today. From this momentum that Maria pointed out. My next post may be a despairing one, as I am heading to an international pain conference, though 😂
Speaking of, if you’re going to be in Amsterdam, hit me up. Or join us at one of the symposia. I’ll be presenting at the MESISIG symposium that I shared above, and will also be chairing the Pain and Trauma SIG symposium: Trauma Informed Healthcare; Where We Are.
I am grateful I don’t ride these waves alone, so thank you all for being here.
Notes:
I wrote this post spur of the moment (because I was jazzed), with minimal editing, in the Substack app which does not do all the spell and grammar checking as far as I can tell. So please forgive typos. If you can’t help yourself and need to point them out, go ahead, I see you.
If you want any of the articles or chapters I mentioned and can’t get them, a lot of them are on my ResearchGate page, or just let me know and I’ll see what I can do.
wow that is so cool that you participated in the WHO low back pain guidance that is amazing and makes me hopeful that more patient leaders can act as leaders in the pain space if they want to. Hard work and flexible persistence of you and others is paying off. So so cool! the conference sounds really neat too - will try to attend
Man, it shows you how hard graft pays off and not to give up on the things you deeply believe in. It's always good to take stock and realise how far one has come because often we are so zoomed into our life we don't have the perspective to see and celebrate our progress. You should feel jazzed because as you have said you had other peoples shoulders to stand on before you, people also have yours too. You're at the top table in the pain world in a good way 😜