Thanks Jo for the though provoking piece. As a pain researcher, former clinician and sometimes a pain patient, I have some thoughts on a few different levels. First, my thoughts are not intended to argue with the points you are making but to put you in my headspace (as it has been for some time).
From my perspective as a pain researcher that works in a largely dysfunctional (US) healthcare environment I actually believe that the solution(s) for pain will not come from more research. That is not to say that research is not cool and/or helpful--after all that is what I get paid to do--but, we have done a lot of research and how much has been actually implemented on any meaningful scale. The key point I am driving home here is that our HC systems are not agile and responsive to the research that has already been done. There are many reasons for this and they don't make a lot of sense at the individual level, that is they have little to do with providing better patient care. Mostly that in the US we simply don't value or have defined what an effective HC system is and how it should operate.
We could research dissemination and implementation strategies but that would actually require HC systems to actually implement changes and be interested in researching those outcomes. While this receives considerable lip service and does seem to be getting more funding I see this progress moving at a snail's pace.
Researchers, providers, and patients are trapped in the same perverse system and therefore all suffer in their own unique ways. Researchers suffer in that there research does not get translated and operates on the fringes of dysfunctional system. Providers suffer in that they are trapped in antiquated models of HC delivery that are not well adapted for helping people with chronic conditions. And of course, Patients suffer worst of all because they are not treated in a humane system that is set up to help them thrive across the lifespan.
I apologize for the overly cynical perspective but as much as I love the accumulation of knowledge I don't see meaningful change until we as a society see some large scale changes in our collective values. I am glad I get to do research because, research is itself fun, I am glad I have helped patients as a provider, and I am thankful for my own pain experiences as they have guided me on my journey. However, advocating for Healthcare 3.0 (or whatever you want to call it) is what is needed. This IMHO is the rising tide that will lift all people with chronic conditions that our current health care system is failing.
I also wanted to say. I agree with you in that building research from the ground up with patients is much needed and a helpful and important step. Historically that has not been the case with research. To the extent that research translates into policies that govern the implementation of our HC system, having more patient informed research should make our health care system better and more patient centered. However, I don't think our HC system cares (explicitly or implicitly) all that much about research. I wonder what our healthcare systems would look like if they were driven from the ground up based on the lived experiences and values of patients. I see this as much more a political point, than a research one though.
Hi Eric! So wonderful to see you here. And thanks so much for sharing your perspective and insights and for continuing the conversation. I share your frustrations (and cynicsism) with the healthcare system. When a system puts profits over people we can never have person-centered care, no matter the intentions of the health professionals working within that system. I tihnk we should all be more alarmed about private equity being so involved in healthcare - the motives shift when a healthcare system is a financial investment rather than invested in the health and well being of the people within the system.
So there's a lot that needs to be done there! It would be wonderful if we could have truly community driven and co-created healthcare systems and solutions. I'm not sure how to get there, but I'll keep trying!
As for the research end of things, of course I hope for more patient/public/community involvement across the entire spectrum, from inception to implementation. I wholly agree that we need less research and more implementation of current trustworthy research findings (I love that Doug Altman quote). I do not think we are quite there yet when it comes to understanding pain and what can be done about it, though. Much of the research on chronic pain interventions, such as education, exercise, manual therapies, etc are of low quality with low certainty of the findings. We do not incentivize quality research, we incentivize quantity. And I'd argue a lot of research isn't done for the right reasons. Publish or perish cultures also lead to skewed motives, whether intentional or not. Too often I see research as people trying to prove themselves, right, too, rather than prove themselves wrong, which is how I was taught reserach was supposed to be done. It all leads to a lot of research that can't be used in meaningful ways at scale for people living with pain. When we keep excluding the people most affected by the problem from the research and the development of the solutions for the problem, we're going to stay stuck where we are, which isn't good for any of us!
Even the best evidence we have for things, with the lowest number needed to treat, we are still at NNTs of around 4. Which is great, no doubt, but also means that 75% of people aren't helped by that particular intervention (often studied in isolation and not how interventions are actually delivered in practice, another major hurdle for implementation of research into healthcare settings!).
Of course I don't think community/public involvement will fix everything, but I do think it's a start. And is needed across the entire spectrum, from research inception to implementation, health systems development and strengthening, public health, etc. There are too many degrees of separation between academia and the people, between the research and the problem. And I'd argue that research is just as political as healthcare systems are. Power and politics are always at play! Both research and health systems need to change (as does our education system - how health professionals are taught and trained definitely matters, too!), to become more centered on people and care more about people (all the people - patients, public, clinicians, researchers, educators, etc), to be more humane, as you said.
People make up these systems, so it is possible to change them. I'm a people! And I'm in these systems and want to change, if we all do, and all come together to do so, maybe we can move the needle a bit! Maybe we can usher in that 3.0 on many fronts, without so many of the false barriers between patients, clinicians, researchers. We're all just humans trying to figure complex shit out so we can do something about it! We can harness that to all of our benefit, I think. I hope.
Appreciate you so much, Eric! For all you do. Even though you were never my health care provider, but you helped me in such immense ways so you can count me amongst the folks with pain you have had a huge positive impact on!
Dear Jo, what matters for me a lot is how I can apply the findings from all this great scientists and studies to myself and my own pain situation. I am very disabled (widespread pain) at the moment, but eager to find a way out. You talk a lot about exposing yourself to the feared/painful activities in a gradual way. And as far as I can understand, one of the skills someone needs to build is the ability to tolerate/accept (=willingness) to experience some pain. I am at a point where I feel like I understand enough, that my body isn't damaged and it's basically a mind game (hypersensitive pain system) and I want to go back to my valued activities. Yet I am asking myself is there a pain that could be too high and further drive this "oversensitivity"? So lets say someone could handle a 8-10/10 pain while walking with little emotional/cognitive reaction, would that person be able to see improvements over time? So can pain itself be the driver of more pain or is it more like everything that comes with it (distress, threat value of pain) that leads to more pain? I often experience no pain during activities but a day or two latter I have flare ups. Do I then reduce the activities or go on, knowing that my body isn't damaged? Its a little bit confusing and different people have different approaches. That are more the practical questions on how to LIVE with pain day in and day out I feel like are getting to little attention for my point of view. I hope this makes sense and thank you so much for sharing your knowledge and stories! Would love to hear your perspective on it!
Dear Dennis, thanks so much for continuing the conversation and sharing your experiences, thoughts, and questions here. I am sorry to hear about your disabling pain. I know navigating life with such pain, while also trying to navigate the landscape of pain research and how it may (or may not) apply to us, can be daunting and difficult. It sounds like you are making good headway, though, even if it may not always feel like it.
And oh boy, do your questions resonate for me! They are questions I often had myself as I was getting back into things, and questions that still pop up for me with flares and now pain in my left hip (my 'good' hip - although I probably shouldn't call it that because it implies my other hip is 'bad'!).
'Can pain itself be a driver of more pain? Or is it everything that comes with it that drives more pain?' I've been thinking this over since reading your comment here, and I'm not sure how to separate the two. I long thought of my pain as a 'thing' and that 'all that comes with it' was somehow separate from the thing (pain) itself. I've even used those words - pain and all that comes with it - in my own thoughts and writings. I wonder now if that is too dualistic? Can the pain somehow be thought of or targeted by itself, in isolation, without the rest of it being a part of it? I'm not sure. It may be a bit like trying to separate the bio from the psychosocial, I don’t think we can (and I don’t think that was Engel’s intention).
For me, when my pain goes up my distress/worry/anxiety (the all that comes with it) tends to go up, too. The opposite can also be true for me. If my worry/anxiety/distress go up (even if it's unrelated to pain), my pain often goes up. I used to joke that my anxiety and pain used to race to the top, to see which one could get worse first. (Used to, that's a hopeful statement, ha!). But now I keep thinking that we're only made of so much stuff. All of our human experiences involve all that stuff (cells, tissues, muscles, nerves, neurons, immune system, hormones, etc), including pain. Our nervous, immune, endocrine, musculoskeletal systems are always involved all the time. If I take care of that as a whole - of myself as a whole - if I try to calm shit down, that may help with the rest of it no matter what the 'driver' of my pain (or flare-ups or anxiety or distress or whatever) might be. That may make no sense at all, I’m sort of thinking aloud here.
Back to the 'do I do more or less?' with a flare-up: I don't know! It's a question that keeps coming up for me now with this new-ish left hip pain, too. I find that when I’m doing things that matter to me, the pain doesn’t bother me much. But, afterward, if the pain does go up a bit, I tend to focus on it and worry about it, and that focus and worry surely exacerbates the pain, which makes me more hesitant to do more things, and it becomes a vicious overthinking cycle for me. I remember this cycle from those earlier years when I was getting back to things! And back then I had these same questions. It doesn’t matter how much I ‘know’, I still worry when my pain goes up, still have to experiment to see what works and what doesn’t, still have to reassure myself that living my life is always better than not living my life, but then also figuring out what that means to me at any given time.
One thing I have noticed with this new pain is that it doesn’t get better with too much rest (I tend to become very stiff if not in motion for a while!), and that I enjoy being more active. So I’m not not doing things.
I’m also maybe not the best person to answer these questions! I remember when I first was getting back to running years ago, I always overdid it. I could never just ease into it. I’d tell myself I was going to take it easy, I’d set specific parameters before going out (jog x minutes, walk x minutes, or don’t jog more than x distance), and then I’d completely ignore it once I got going because I was enjoying being out and doing something I love and that makes me feel good and feel like me. I would MASSIVELY flare up sometimes, and then not run for a while, and then do it all over it again. It probably would have been better to pace myself more, to ease into like I planned. But in the end I can’t go back and see what would have happened had I taken a different approach, and my perhaps ill-advised approach eventually led to me running again. It didn’t cause me to be more over sensitive or cause more pain over time. And my right hip (the ‘bad’ one) is still doing great compared to where I was at years ago.
Morten Hoegh has presented on the experience of pain over time and for most of us it doesn’t resolve, but it also doesn’t get worse over time. That actually gives me a lot of hope because I think a big fear of mine IS that it will only get worse. But if it doesn’t, and I can live my life with that pain and make my life bigger around the pain, that is a good thing, and maybe the pain will actually improve over time (or ‘all the things with it’ will improve? Again - hard for me to separate the two! I know at least it will not take up so much of my time and energy, not take up so much space in my life, if I focus on all the things that matter to me more than I focus on the pain). I think that comes to the willingness you were talking about.
In the end, I’m not at all sure the answers, even for myself. But I’ll keep experimenting to see what works, and go from there. And I really appreciate your questions because I needed the reminder that living my life is never a bad experiment, and I had been starting to scale back on things because of my left hip, and thinking about it/worrying about it WAY too much. So thank you :) And thanks for listening as I ramble here!
Thanks Jo for the though provoking piece. As a pain researcher, former clinician and sometimes a pain patient, I have some thoughts on a few different levels. First, my thoughts are not intended to argue with the points you are making but to put you in my headspace (as it has been for some time).
From my perspective as a pain researcher that works in a largely dysfunctional (US) healthcare environment I actually believe that the solution(s) for pain will not come from more research. That is not to say that research is not cool and/or helpful--after all that is what I get paid to do--but, we have done a lot of research and how much has been actually implemented on any meaningful scale. The key point I am driving home here is that our HC systems are not agile and responsive to the research that has already been done. There are many reasons for this and they don't make a lot of sense at the individual level, that is they have little to do with providing better patient care. Mostly that in the US we simply don't value or have defined what an effective HC system is and how it should operate.
We could research dissemination and implementation strategies but that would actually require HC systems to actually implement changes and be interested in researching those outcomes. While this receives considerable lip service and does seem to be getting more funding I see this progress moving at a snail's pace.
Researchers, providers, and patients are trapped in the same perverse system and therefore all suffer in their own unique ways. Researchers suffer in that there research does not get translated and operates on the fringes of dysfunctional system. Providers suffer in that they are trapped in antiquated models of HC delivery that are not well adapted for helping people with chronic conditions. And of course, Patients suffer worst of all because they are not treated in a humane system that is set up to help them thrive across the lifespan.
I apologize for the overly cynical perspective but as much as I love the accumulation of knowledge I don't see meaningful change until we as a society see some large scale changes in our collective values. I am glad I get to do research because, research is itself fun, I am glad I have helped patients as a provider, and I am thankful for my own pain experiences as they have guided me on my journey. However, advocating for Healthcare 3.0 (or whatever you want to call it) is what is needed. This IMHO is the rising tide that will lift all people with chronic conditions that our current health care system is failing.
I also wanted to say. I agree with you in that building research from the ground up with patients is much needed and a helpful and important step. Historically that has not been the case with research. To the extent that research translates into policies that govern the implementation of our HC system, having more patient informed research should make our health care system better and more patient centered. However, I don't think our HC system cares (explicitly or implicitly) all that much about research. I wonder what our healthcare systems would look like if they were driven from the ground up based on the lived experiences and values of patients. I see this as much more a political point, than a research one though.
Hi Eric! So wonderful to see you here. And thanks so much for sharing your perspective and insights and for continuing the conversation. I share your frustrations (and cynicsism) with the healthcare system. When a system puts profits over people we can never have person-centered care, no matter the intentions of the health professionals working within that system. I tihnk we should all be more alarmed about private equity being so involved in healthcare - the motives shift when a healthcare system is a financial investment rather than invested in the health and well being of the people within the system.
So there's a lot that needs to be done there! It would be wonderful if we could have truly community driven and co-created healthcare systems and solutions. I'm not sure how to get there, but I'll keep trying!
As for the research end of things, of course I hope for more patient/public/community involvement across the entire spectrum, from inception to implementation. I wholly agree that we need less research and more implementation of current trustworthy research findings (I love that Doug Altman quote). I do not think we are quite there yet when it comes to understanding pain and what can be done about it, though. Much of the research on chronic pain interventions, such as education, exercise, manual therapies, etc are of low quality with low certainty of the findings. We do not incentivize quality research, we incentivize quantity. And I'd argue a lot of research isn't done for the right reasons. Publish or perish cultures also lead to skewed motives, whether intentional or not. Too often I see research as people trying to prove themselves, right, too, rather than prove themselves wrong, which is how I was taught reserach was supposed to be done. It all leads to a lot of research that can't be used in meaningful ways at scale for people living with pain. When we keep excluding the people most affected by the problem from the research and the development of the solutions for the problem, we're going to stay stuck where we are, which isn't good for any of us!
Even the best evidence we have for things, with the lowest number needed to treat, we are still at NNTs of around 4. Which is great, no doubt, but also means that 75% of people aren't helped by that particular intervention (often studied in isolation and not how interventions are actually delivered in practice, another major hurdle for implementation of research into healthcare settings!).
Of course I don't think community/public involvement will fix everything, but I do think it's a start. And is needed across the entire spectrum, from research inception to implementation, health systems development and strengthening, public health, etc. There are too many degrees of separation between academia and the people, between the research and the problem. And I'd argue that research is just as political as healthcare systems are. Power and politics are always at play! Both research and health systems need to change (as does our education system - how health professionals are taught and trained definitely matters, too!), to become more centered on people and care more about people (all the people - patients, public, clinicians, researchers, educators, etc), to be more humane, as you said.
People make up these systems, so it is possible to change them. I'm a people! And I'm in these systems and want to change, if we all do, and all come together to do so, maybe we can move the needle a bit! Maybe we can usher in that 3.0 on many fronts, without so many of the false barriers between patients, clinicians, researchers. We're all just humans trying to figure complex shit out so we can do something about it! We can harness that to all of our benefit, I think. I hope.
Appreciate you so much, Eric! For all you do. Even though you were never my health care provider, but you helped me in such immense ways so you can count me amongst the folks with pain you have had a huge positive impact on!
Dear Jo, what matters for me a lot is how I can apply the findings from all this great scientists and studies to myself and my own pain situation. I am very disabled (widespread pain) at the moment, but eager to find a way out. You talk a lot about exposing yourself to the feared/painful activities in a gradual way. And as far as I can understand, one of the skills someone needs to build is the ability to tolerate/accept (=willingness) to experience some pain. I am at a point where I feel like I understand enough, that my body isn't damaged and it's basically a mind game (hypersensitive pain system) and I want to go back to my valued activities. Yet I am asking myself is there a pain that could be too high and further drive this "oversensitivity"? So lets say someone could handle a 8-10/10 pain while walking with little emotional/cognitive reaction, would that person be able to see improvements over time? So can pain itself be the driver of more pain or is it more like everything that comes with it (distress, threat value of pain) that leads to more pain? I often experience no pain during activities but a day or two latter I have flare ups. Do I then reduce the activities or go on, knowing that my body isn't damaged? Its a little bit confusing and different people have different approaches. That are more the practical questions on how to LIVE with pain day in and day out I feel like are getting to little attention for my point of view. I hope this makes sense and thank you so much for sharing your knowledge and stories! Would love to hear your perspective on it!
Dear Dennis, thanks so much for continuing the conversation and sharing your experiences, thoughts, and questions here. I am sorry to hear about your disabling pain. I know navigating life with such pain, while also trying to navigate the landscape of pain research and how it may (or may not) apply to us, can be daunting and difficult. It sounds like you are making good headway, though, even if it may not always feel like it.
And oh boy, do your questions resonate for me! They are questions I often had myself as I was getting back into things, and questions that still pop up for me with flares and now pain in my left hip (my 'good' hip - although I probably shouldn't call it that because it implies my other hip is 'bad'!).
'Can pain itself be a driver of more pain? Or is it everything that comes with it that drives more pain?' I've been thinking this over since reading your comment here, and I'm not sure how to separate the two. I long thought of my pain as a 'thing' and that 'all that comes with it' was somehow separate from the thing (pain) itself. I've even used those words - pain and all that comes with it - in my own thoughts and writings. I wonder now if that is too dualistic? Can the pain somehow be thought of or targeted by itself, in isolation, without the rest of it being a part of it? I'm not sure. It may be a bit like trying to separate the bio from the psychosocial, I don’t think we can (and I don’t think that was Engel’s intention).
For me, when my pain goes up my distress/worry/anxiety (the all that comes with it) tends to go up, too. The opposite can also be true for me. If my worry/anxiety/distress go up (even if it's unrelated to pain), my pain often goes up. I used to joke that my anxiety and pain used to race to the top, to see which one could get worse first. (Used to, that's a hopeful statement, ha!). But now I keep thinking that we're only made of so much stuff. All of our human experiences involve all that stuff (cells, tissues, muscles, nerves, neurons, immune system, hormones, etc), including pain. Our nervous, immune, endocrine, musculoskeletal systems are always involved all the time. If I take care of that as a whole - of myself as a whole - if I try to calm shit down, that may help with the rest of it no matter what the 'driver' of my pain (or flare-ups or anxiety or distress or whatever) might be. That may make no sense at all, I’m sort of thinking aloud here.
Back to the 'do I do more or less?' with a flare-up: I don't know! It's a question that keeps coming up for me now with this new-ish left hip pain, too. I find that when I’m doing things that matter to me, the pain doesn’t bother me much. But, afterward, if the pain does go up a bit, I tend to focus on it and worry about it, and that focus and worry surely exacerbates the pain, which makes me more hesitant to do more things, and it becomes a vicious overthinking cycle for me. I remember this cycle from those earlier years when I was getting back to things! And back then I had these same questions. It doesn’t matter how much I ‘know’, I still worry when my pain goes up, still have to experiment to see what works and what doesn’t, still have to reassure myself that living my life is always better than not living my life, but then also figuring out what that means to me at any given time.
One thing I have noticed with this new pain is that it doesn’t get better with too much rest (I tend to become very stiff if not in motion for a while!), and that I enjoy being more active. So I’m not not doing things.
I’m also maybe not the best person to answer these questions! I remember when I first was getting back to running years ago, I always overdid it. I could never just ease into it. I’d tell myself I was going to take it easy, I’d set specific parameters before going out (jog x minutes, walk x minutes, or don’t jog more than x distance), and then I’d completely ignore it once I got going because I was enjoying being out and doing something I love and that makes me feel good and feel like me. I would MASSIVELY flare up sometimes, and then not run for a while, and then do it all over it again. It probably would have been better to pace myself more, to ease into like I planned. But in the end I can’t go back and see what would have happened had I taken a different approach, and my perhaps ill-advised approach eventually led to me running again. It didn’t cause me to be more over sensitive or cause more pain over time. And my right hip (the ‘bad’ one) is still doing great compared to where I was at years ago.
Morten Hoegh has presented on the experience of pain over time and for most of us it doesn’t resolve, but it also doesn’t get worse over time. That actually gives me a lot of hope because I think a big fear of mine IS that it will only get worse. But if it doesn’t, and I can live my life with that pain and make my life bigger around the pain, that is a good thing, and maybe the pain will actually improve over time (or ‘all the things with it’ will improve? Again - hard for me to separate the two! I know at least it will not take up so much of my time and energy, not take up so much space in my life, if I focus on all the things that matter to me more than I focus on the pain). I think that comes to the willingness you were talking about.
In the end, I’m not at all sure the answers, even for myself. But I’ll keep experimenting to see what works, and go from there. And I really appreciate your questions because I needed the reminder that living my life is never a bad experiment, and I had been starting to scale back on things because of my left hip, and thinking about it/worrying about it WAY too much. So thank you :) And thanks for listening as I ramble here!