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PAINCAST - a creative podcast from the PAINSTORM clinical research team and its patient partners exploring neuropathic pain and the impact of living with it. Presented and co-produced by BBC broadcaster and writer Fiona Talkington who lives with neuropathic pain.
Artwork: "The Pain of it All”, Michele Angelo Petrone, Wellcome Foundation
Painstorm Podcast_Ep.3.mp3
Hello, I'm Fiona Torkington. Welcome to the Painstorm.
Podcast. And I'm Mark Smalley. And Fiona, we've recorded the Painstorm podcast before in London, in Oxford, Bristol. My living room. But now, indeed. And but now we are in your hometown of Reading and we can hear the wind through the trees above in this very nice setting.
This is a beautiful setting. This is the London Road campus of Reading University. We're standing just near the Great Hall. We're just standing beside some cloisters. This is historic part of Reading university. It's beautiful. But we're doing this paint cast here today at Reading largely because of my now good friend, Rich Harrison from Pain Research Reading. Rich, we're here. In the middle of a day of pain, it's called the puzzle of pain and the question is what is pain research? How did we get here?
It's a really interesting question. On face value, it's four words. Once you start to be able to dig into it a little bit, you realise how many nuances there are, how many perspectives are required to be to answer it, and how important it is to patients who are living with pain, as well as the clinicians who are dedicating their lives to try and tackle it. So the question has an enormous amount of weight and importance. In terms of our own personal journey, it's been lovely working together over the past three years or so. Pain Research Reading, my network has been going for about 10, 11 years now, I think. And we've been just trying to generate from a cold start, as it were, to be able to become a functioning network. And this is part of the symptom of that process, I think, and it's been really lovely to be able to share what we do and what you do and what PainStorm do and see how we assimilate together so nicely and just know that we're all pushing in the same direction. So yeah, so what is pain research? It's the question that motivates me to work every Monday morning, but it's much more than that as well.
We're going to find out very shortly because we've got a panel of PainStorm superstars, as well as one of your colleagues, Ipka Agandhi from Pain Research Reading, who's joining us on the panel. So I think although, as you know, PainStrom is really focused on neuropathic pain research and that is our goal to know where can we go from. The crossover between your chronic neuropathic pain and many other different types of pain is relevant to all the listeners that we've got for our podcast. So thank you so much for hosting us. There's a packed hall ready to join in with their own questions. So shall we make our way to the great hall? Through the cloisters, sort of grand entrance and the audience awaits. Hello, Reddit. Thanks very much. Welcome to Paincast. It's great to be here in Reading. Thank you to Pain Research Reading for hosting us. The panel is ready and waiting to take your questions and discuss the knotty issue of the puzzle of pain and what is pain research. I'm good to ask all to introduce yourselves briefly.
Thank you Fiona. So I'm David Bennett. I'm Professor of Neurology and Neurobiology at the University of Oxford, so just up the road. I have a clinical interest in peripheral neuropathy and neuropathic pain, that pain that arises due to nerve injury, and I see patients weekly with this condition, and have a long-standing interest in understanding neuropatheric pain and the research mechanisms behind it so that hopefully we can develop new treatments.
Thank you, Dave. I'm Andrew Rice. I am professor of pain research at Imperial College London. Like David, I'm interested in neuropathic pain, but particularly in the context of infectious diseases like leprosy, HIV, shingles, also conflict-related trauma and amputation. And where I cross with Dave, we've had many collaborations, is in diabetic nerve damage. And I'm also currently president of the International Association for the Study of which is the major interdisciplinary grouping of paying professionals in research, education and paying management.
Thank you. My name is Alina Schmid. By training, I'm a physiotherapist, but also I'm a Professor of Pain Neurosciences at Oxford University and I'm a member of PainStorm. My interest specifically lies in nerve related pain as well and understanding why some people develop persistent pain after a nerve injury there as others recover.
Hello, I'm Ed Kehoe. I'm a professor in the Department of Psychology at the University of Bath. So my background is in psychology. In terms of interest in pain, it is the psychology of pain. That's the core interest. In terms research interests, I think the main area of research has been really looking at individual differences and in particular, the role of sex and gender in pain as well as the way in which we think, feel and behave.
Hello, my name is Wiebke Gandy. I'm a lecturer in psychology here at the University of Reading. I've been in pain research for just over 20 years now, started as an undergraduate student. And my interest lies in the influence of psychological factors on pain, specifically the sensation of having control over pain and also looking at the neural underpinnings of these factors.
So, Dave, the burning question today is unravelling the puzzle of pain and what is pain research?
Well, I think by definition, I don't fully understand the puzzle of pain, and it's like a very complex jigsaw. My wife likes jigsaws, and particularly the thousand piece ones. And there's many pieces which I think we haven't fully fitted into this puzzle as of yet. I think what makes pain research important is it's so common. And it's such an important cause of disability in the population. And its complex because it is very multifaceted. And the only where you're going to understand it. Is by taking into account psychological factors, societal factors, the basic principles by which the nervous system detects tissue injury and then responds to that. And I think we're going to need to take into account of all of those factors and see how they interact if we're really going to make progress on pain research. So this is a real challenge to humanity, I think, that we need to face. So I think there's a health imperative to understand pain at a human level. Of course, there's also... The fundamental knowledge about how the brain works but I really do it because I'm interested in people and you know I would like to improve the health of humanity in any way I can.
Speaking from a patient's point of view, because as regular listeners will know, I live with chronic neuropathic pain. I would like to think that a lot of this research is going to benefit me and anyone who lives with chronic pain. So the aims are interesting and fascinating. As a scientist, there are many different pathways that you go down, but is there ultimately at the back of everyone's mind. Well, who's this fool?
And I think one way of answering that is to look at what the impact of pain is on a on a global level. So we quite often use something called the global burden of disease study, which is the most authoritative study on the impact to disease. And some diseases are important because they kill you cancers, certain infections, heart disease, stroke, for example. But the diseases that have the most impact on society, both an individual and the societal level. Without any doubt pain, chronic pain and mental health and when you put them together the cost to individuals, the cost to society is huge, yet they don't receive as much attention as other diseases like cancer and heart disease.
And Anina, you, as a background with physiotherapy, you literally hands on with patients alongside your research. Does that bring you closer to the, what can we do for people?
Yeah, absolutely. I think many of us probably entered pain research as clinicians because we realised how difficult it is for people who are living with chronic pain and also probably realising that we are not actually very successful in supporting people with chronic pain. That was certainly the case for me. Am I or am I personally much better? Probably not. Can I understand people better? Probably yes. Do I have many more questions than before I entered research? Most certainly. So I think it's a pathway and it's a pathway that is of course slow and often slower than what we hope it is. But it's certainly something that many of us and I certainly have the ultimate goal to help find better strategies for people who are in pain.
Ed, at the Centre of Pain Research in Bath, you cover so many different topics of pain. Painstorm, we're very focused on the impact of neuropathic pain, but with the fingers in a lot of pies, can you see the end result, the motor car at the end of the production line, if you like?
That's a tough question, isn't it? I mean, there is, you can look at pain very specifically because you can at specific conditions, but there are ways in which you can step back. And think of some commonalities. So certainly the way you think, you feel, you behave. The impact it has on you as well. I mean, there are common issues there which I think we can sort of step back and generalise. Coming back to an earlier question about what is it that interests you? For me, it's the complexity. I think you've heard that already. The complexity of pain, the puzzle of pain. What is pain is a deeply subjective experience. I think that means you have to take biology, psychology, and the wider social context into play, to understand, it's highly complicated.
And Vipka, you're located here in Reading, daily contact with students. How do you integrate students into the goal of connection with patients and needs?
I mean, the first thing we do is we integrated pain in our teaching. We now teach psychology students what chronic pain is and in our teacher, we try to involve patients who can report about their lived experience to get, or to give the students a better idea of what it means to live with chronic pain. Obviously, we also teach the neurobiological the pinnings of the condition to and try and provide as much of a holistic understanding of pain as we can, and then obviously they do in many students we pique an interest in the topic, they then come and do their MSc or PhD thesis with us and contribute to the research that's being done in Reading.
Painstorm has just had its annual general meeting in London over the last few days, and having been connected with it for the last few years, what's emerged is the speed of research now, as I think I was describing it the other day, is we're now in the third movement of a symphony, that the scherzo, the energy has gathered. You could just tell in the different presentations how people are now grasping. The site of what the issues are. It's also reminded me how at the very beginning, there were a lot of questions about ethics and protocols. And I find all of that immensely fascinating because if we talk about research, maybe one example might be you see adverts on television for joining in walks for cancer research, people are willing to. Give to cancer research, it's very important for the treatment of cancer, that there are people contributing to that. But of course, research is going on across the world in many, many different ways. And while that image of being in a lab, before you even get to that stage, there are many things that you have to go through. And I wondered if it would be quite interesting to explore that when you put in a proposal for research projects. There are certain questions asked of you before you can actually get moving at all. So what about some of those questions, Dave?
So I think your question is some of the questions we have to ask on applications, which seem to be expanding, but are very important. At the end of the day, painstorm and much of pain research, I think the starting point really should be either those living with pain or those at risk with pain. And clearly we need an ethical structure as to how we... We work with human participants, but there is a whole governance structure around research. I think the ethics part is very important. I think if you want my opinion at times, things could be streamlined. And in fact, one of the things that I think the pandemic taught us as a population, is if you really, really have to do something really fast and get through these ethical approvals really fast and put something in place, such an immunisation programme really fast, you can do it. If there's kind of, if you kind of really are intent on the goal and trying to. So I think governance is really important. At times, we could think about how we could make it more efficient. But this is something that we've, as you would have seen, and kind of you're mentioning at the beginning of the project, it's something that takes a lot of thought and quite a lot of time to get through these procedures.
Ed, in your work, how does all...
This cross your path? Well, I think the other aspect around this that is once you've collected the data and the information, what do you do with it? How do you store it? How is that securely stored? Is it anonymized? And so there's a whole issue around data protection as you can imagine, and making sure the information is kept confidential. And then on the other side, what you also have is some really interesting changes in science. There's a hole area of work around open science where the principle is around making data available. And sharing data, and internationally. And so you've got this interesting sort of, not contradiction, but sort of tension between the two where you want to make the data open and accessible at the same time, maintain confidentiality, et cetera. And this is a change in an evolving area.
Equality and diversity, those must be issues that are absolutely burning more and more in answering what people need to allow you to go forward with the research. Cultural differences, so many different questions. Andrew, you travel the world, you travel a lot, you see so many issues and so many approaches to pain research. How has the seeds of equality and diversity impacted perhaps in different parts of the world.
Thank you Fiona. I mean, it's something that the whole community are working on and we all recognise it's a deficiency. So in pain storm, for example, we're collecting a lot of information from participants who have diabetes and nerve damage related to diabetes. But we find that ethnicities from Africa, Afro-Cuban and South Asian are underrepresented, yet they're often communities that are heavily impacted by diabetes for example. And the other thing I think we have to recognise is that the vast majority of pain research or any type of biomedical research outside of tropical medicine is done in northwestern Europe and North America and Australia. And therefore it's relevant to those communities. Now, actually we have opportunities in particularly in places like London that have people from many different communities but they're still underrepresented. Painstorm has... In a small way reached out to that. We have satellite activity or collaborative activity in India in particular and also in Thailand now because we don't necessarily know whether the results we get here will be relevant to people in a Thai population, for example. And you have to think that 80% of the world live in low and middle income countries, yet most of the research is not done on those communities. And in fact, that's why we... We've badged this year ISP as our global year on low and pain research, education and management in low and middle income settings. Settings doesn't mean just countries, although countries are a major part of that, but it also means marginalised groups in high income economies. And we're learning a lot from that exercise. Vipka, I think he wants you to come in and...
I just wanted to add to this. You said most of the pain research is done in, let's say, North America and in Europe, and that is true, but even within our countries. I mean, when we mostly work with our student population, we have a very diverse student populations with people coming from all over the world, and I think for a long time, we always treated them as one UK-based population, and we've now started to look into the cultural differences a lot more when we knock into. Psychological treatment, for example, and reappraisal of a situation, started to look into sort of the differences, the cultural differences that we see even within our UK-based population, dependent on where people come from, what cultural beliefs they have.
Again, speaking from the patient point of view, we want to know that research is going to enhance better understanding of our particular pain and enhance treatments and make treatments more available. It seems in some ways such a long-term thing. And I think many people in the audience here will say, when am I going to see results? When, what's going to happen? Uh, when When can you make me better? I mean, and that's fair enough as a question.
Yes, it's a frustration I think we all share actually that, you know, it takes decades sometimes from that basic research and trying it out, seeing what works, what doesn't work, trying it again, going through that whole process, so you're really confident in the results that you've got. And it's not unique to one institution, for example, or one centre, but this is an effect or a benefit that actually cuts across and generalises and has that reach. And yes, it's a frustration. I guess, you know, we're building on work that's already being done. So, yeah, I think that it is an incremental type process. I suppose ultimately what we're trying to do is identify those potential areas which could be targets for change. I think, that's what's probably underpinning all the type of work we're doing here from the molecular through to the psychosocial. What things could we target? Could we sort of disrupt that pathway into chronic pain? It's not easy, but yeah, I think we are beginning to get. Ideas of where we could.
Patients are a reality or research doesn't mean that you're hidden away.
No, absolutely. I mean, I kind of it's a good motivator and reminder for me, I see patients on a on a weekly basis, fully aware of the challenges faced and the fact that we do need better treatments. I'm just coming back, I am going to beg patients. And I think it's of course, we're all desperate to develop better treatments, but that will need to be on a platform of really better mechanistic understanding of the problem. And, I guess to give you an understand kind some idea of that. So I remember when it was John Wood published in Nature that he discovered a particular type of sodium channel that was selectively expressed in nociceptors. Those neurons are designed to detect tissue injury. That was in 1995. And a drug which was based on targeting that iron channel to try and silence those nociceptors for postoperative pain, that was only FDA approved in the last year. So that's a 30-year. And that's not unusual. I mean, and that's because you need to understand the system. You then kind of need to understanding it on a physiological basis and how it contributes to human disease. Then you need develop a selective drug and then you need to go through a whole series of trials to show that that drug is effective and safe. So it really is a long process. That's not to say that there can be some discoveries that can have a much quicker impact. I guess a good example is we've got better screening tools for neuropathic pain now. We've discovered some conditions that we didn't realise were due to nerve injury that we now do realise due to no injury. And that means that people put on treatments much more quickly. Painstorm only has a five-year duration. I'm hoping it's gonna have a very long legacy.
That's a very good way of putting it. You're listening to the Painstorm podcast with me, Fiona Torkington. We're here at University of Reading in a day called The Puzzle of Pain. We're delighted to have been invited by Pain Research, Reading to be part of this day, covering, well, at least some of the puzzles of pain. Let's ask the audience now.
Thanks. I have a very personal interest in this topic, although I do work at the university outside of research. It strikes me that anecdotally recently, I'm hearing a lot about the links between chronic pain conditions, autoimmune conditions, and neurodiversity. And I wondered if anyone would like to reflect on how you think about... Neurodivergent individuals, and potentially people with conditions such as complex PTSD, things that affect, I think, motivation. We can link that in with dopamine, which we know is a problem in ADHD, and also with kind of rigid thinking made me think a lot about myself and a lot of the autistic people I know who can be very black and white in the ways that we think, and how these things kind of impact on not just the patient, but actually how you conceive of your research.
No matter what results we're looking at, it's hardly ever the same for everybody that we study. You see huge individual differences across the groups and as you rightly said, the dopaminergic system is one of the systems we're interested in and often we see sort of, if you're just looking at pain symptoms, we see quite similar symptomatologies across different patients, but sometimes they were driven by different underlying mechanisms. We see that people low in... Reward sensitivity, so those people are not really motivated by rewards, but also those highly driven by rewards seem to be most affected by a situation where they can't control pain. So they may show the same symptoms, but in order to treat them correctly, we need to look sort of under the surface and understand what these changes are driven by to treat the properly. And I think a lot comes down also to take the time to understand the patient better too. To listen to the patient and understand the complex situation of the patient, and instead of treating everybody the same way, try to go more towards the individualised.
Let's just add as well, because you were also mentioning autoimmune and the immune system, etc. And it's a topic that is massive at the moment in the field of pain research. Some of you might have heard that there are certain conditions like fibromyalgia, where it's out there that it might have an autoimmune component. It probably will turn out that this will be the case in some people, but not in everyone. But the immune system is studied quite strongly at the moment in the field of pain across different conditions. So we are studying it in the context of nerve injury. And while we know that usually if you have an injury, you have inflammation, but after a few days, that inflammation goes away. We do find that people who had a nerve injury keep that inflammation inside the nerves for many years afterwards, for example. So I think that interaction of the immune system, excitability of nerves, potentially pain, is a very big topic that we are probably only just starting to scratch the surface. And my prediction would be, it's not gonna be the answer to everything, but it might help explain some conditions or some presentations.
Thank you, great question, great answers. Rich, I wonder if we might have some quick fire questions.
Absolutely. What helps you with your own pain? So we're doing an introspective personal dive with that one. How do you manage your own paying personally? Not well.
I had a knee replacement recently and you can ask my wife how well I managed it and it wasn't particularly well, I wasn't a good patient. Don't take from our own examples.
Yeah, I thought it's quite interesting, isn't it? Getting a bit older and starting to get pains here and there. And you kind of start to realise, it's kind of easy as a clinician to say, that's what you should do, that's you do when you have pain. But when it actually comes to applying it to yourself, it's a quite a different thing. And we all know what is a healthy lifestyle and we technically probably all know what might be the right things. It's in a way a good experience to experience pain myself.
Well, as Nina knows, Nina does research on sciatica. And I have had episodes of suffering from sciatical. I have to say, I have learned, I need to do what the physio tells me to do. So keeping active is extremely helpful and keeping up doing those exercises. I've learned from experience that physical activity can be very beneficial.
Any other?
Pain admissions here? Fiona, if I may, can I turn that question back to you? I mean, you've mentioned that you suffer from pain. How do you yourself manage your pain?
Well, the public part of me will say, well, I turn to creativity and expression of pain and work a lot with our communication and understanding. And that's very true, that I have learned how to have a relationship with my pain, rather than pain is this chain that I drag along. I work at having the relationship with my pain so that I'm not living with something that I am conflict. With, which is then another. But of course, there are times when the duvet is over the head that just everything is too much. And sometimes the greatest pressures come not from the pain itself, but from other people's lack of understanding, so that it impairs quality of life, social relationships, earning a living, not being able to do the things that I used to, but not being understood, because I didn't look ill. So the invisibility of pain is just as much of a frustration as the pain itself. So how do I manage? Well, actually, events like this, being part of Painstorm, being able to communicate with others and try and enhance the world of pain as experienced by patients. Maybe that's also how I manage it. Rich.
So we had quite a few anonymous questions posted that are of very high quality. What gets in the way of translating research knowledge to clinical practise, which is a broad question. And in particular, the hurdles that you foresee that prevent.
It's a particular interest of mine. So several of us work both clinically and in basic science labs, and we've been facing this quandary. So over the past 50 years, our understanding the basic mechanisms of pain has increased exponentially. There's a massive amount of knowledge in just filtering that. Just to give you one example, two pain researchers, I think it's three years ago, won the Nobel Prize. For discovering how nerves sense pain and other sensations. But translating that knowledge through to new treatments has been very, very challenging. And we've looked at several aspects of that. And one area we're trying to tackle is we were probably doing too much research, so filtering that research and reproducing research was not a... Seen as an important thing to do. So you move on to the next discovery, but in fact, reproducing findings, as Ed referred to, is really, really important. And there's a whole network on that in the UK called the UK Reproducibility Network. But then we also have to look at our own track records and admit that quite a lot of the quality of pain research in the translational area has been a very poor quality over the last few years. And there is now a big initiative. To try and improve the quality. Perhaps do less research, but do better research. So quote from Doug Altman, who was a great scientist in Oxford in biomedical research. That is actually going to be quite a difficult thing to do because it requires us replacing the novelty of a finding with actually the reproducibility of the finding. And that really requires a whole sea change in the way scientists and science is assessed by institutions like the university. Promotion now. Is generally around getting that great new paper, the novel paper. We would like to replace that with the rewards coming from producing a high-quality science that asks important questions that's really rigorous and can be reproduced. I'm not going to pretend it's not challenging, but we've got huge amounts of knowledge from basic science, really important stuff, and that translation into useful things for patients is massively challenging and it's going to require us to also look at some very challenging ideas for ourselves.
If we're looking at having less research, quicker translating to patients, does that put a pressure on universities, for example? Students coming up through the research ranks, are they going to have fewer opportunities to follow in the footsteps of researchers?
I don't think so. I mean I think the opportunities will still be there. The way you get there might change and certainly I know if my own people are doing PhDs with us you know we are really focusing on that quality and I think almost like an answer to how do you get the quality in there, actually coming back to what we were saying right at the start, talking to people with lived experience. What really matters and getting that into your research and helping develop those research questions make them meaningful. There's opportunities there as well.
If for instance you're trying to develop a drug, to actually take from primary research and then think about how you can design trials, how you could engage with lots of different, which are now usually, well almost always need a large cohort of people living with pain across many diverse healthcare organisations. We were talking about there's ethical approvals earlier we're getting we need engagement from the healthcare system which can be challenging if the NHS is under a lot of stress and strain and you need engagement. From industry partners co-designing good responsive outcome measures there Well. Islands in the country where that is happening, so examples are the biomedical research centres, but we kind of need to spread that expertise out and try and get that co-working between these different organisations to really relentlessly try and improve translation.
I guess one thing that students have to learn early is how to communicate to one another. You need to learn to communicate your research to colleagues from without your field, but also you have to be able to communicate complex topics or scientific topics to the patients and understand their language as well. And I think that's something that we've started to do already, trying to work on the communication aspect of research as well as sort of the. Mechanisms.
So I just want to pick out on a point that Dave mentioned. So the big changes have been people working together, that's what Painstorm's all about, and listening to people who are living with pain. But there's another aspect that slows down the whole translation area that is really important, and that's the overregulation and the bureaucracy associated with research. So Painstorm is running for five years. It took us 18 months to get the approvals. We were paying full salaries of researchers to do very simple studies, not drug trials, just observational studies. That is horrendously inefficient use of research money. And then conversely, we saw in COVID, when there was an urgent situation that the world and the nation really needed to tackle, some really innovative approaches came in. And I just hope that in pain research, we can learn and benefit from those and use some of those. Really innovative research methods for doing trials. And I think they're coming, things like platform trials. But the cost of bureaucracy and over-regulation research on one level is good, but it does impede research. We've probably gone too far in one direction now. I can see nodding heads.
Any more questions? Thank you. Thank you very much for today. My question focuses on two things. One is sharing the information with people who actually live with pain because information, knowledge is power, as I'm sure everybody here would agree. Recognition and validation of the fact that you have pain is that power. And secondary to that is gender differences, which has been touched on. And it is the experience of a friend of mine who has written a book called The Unheard. Raghoshri Dariwan, although she had been a doctor on the ward she was in, she could not negotiate any medication for her pain control with suspected ovarian torsion, except paracetamol until. Her husband came in and things changed.
Yeah, you're talking to a very important point and I think in pain research we have been massively guilty of focusing, so not just in human studies, very much on male participants often or young students in many research projects as well. Sometimes that's completely okay but sometimes that's not okay. And in pre-clinical research, so in animal research, that has been a massive problem, that a lot of the research was done in male animals, for example. So in pain research, there has been a big push to remedy that problem. That doesn't mean we are there yet, but I do think the cognition that this is a massive programme and should absolutely be changed is really big. And so for example, when we now write even applications to a funder in the UK to get some money for pain research, we have to justify what do we think, for example in terms of ethnicity, but also gender balance, for example that we think we are targeting, that sometimes depends on conditions as well. But it's absolutely not acceptable anymore to do a study just in male for example. And many funders now even ask us to present the data separately. So in the current guidelines, for example, it is in there that we should, even if we are not having enough people, generally to look at these group difference between male and female, for examples, but we should at least report the difference separately, say in trials of medications, for people with pain. So I think there is a big portion, it's a very important topic that you're talking to, we still have a way to go.
Can I add to that? This is 20 years of my life you're talking about here. So yes, I'm completely in agreement with you. I mean, looking at the difference between men and women, boys, girls, women's pain is often disbelieved. And that's a real issue there. And certainly, as you heard, there are changes. Women are excluded from clinical trials. We need to change that. We need do better. We need better as researchers. And as we just heard, actually how we go about analysing our data rather than statistically controlling the difference between men and women, for example, actually look for them. Now, there may be no differences. And that's as important as knowing that there is a difference. And even if the numbers aren't quite there and you're not quite sure that you've got the statistical power to detect a difference, If we actually report the data separately for men and women, then what we can actually start to do is aggregate across these different studies and pull the data together so we can start to actually look at that. So I think we do a step change in how we approach this.
Thank you for the question. Very quick point, Joe. I've known Joe for many years, so we can have robust conversations. There was one word you used that troubled me. You talked about sharing our information with people with lived experience. Actually, I was surprised that you didn't take it well. How can we interpret our results if we don't interpret them with... So I was taking the step from further. There's no point in sharing it to you with you once we finished it. People with lived experiences should be involved from the inception, certainly in the design, but also... I can't interpret my results unless you tell me what your perspectives are.
Let's dream a little, shall we? If money were no object in terms of pain research, what would you like to do?
One of the challenges for research is often we're looking at snapshots and we're following people one point in time. I think following people's experience over time is incredibly powerful. So it sounds a bit dull because it's slightly more of the same, but I would say if we could really extend longitudinal cohorts, similar to what we're doing, but on a grander scale. The power of following. Group of people, a large group of people over time with linked bio-samples, targeted questionnaires, to really tease out some of these factors, I think would continue to be incredibly powerful, actually.
And speaking with my patient hat on, that sounds absolutely what's needed, especially when you've had a window onto pain research. How can this come to an end? Because we're just getting the golden nuggets coming through. We want to go further. So to have that rich pot of funding allowing that is definitely music to my ears as well.
Andrew, unlimited budget. It's a slight sort of tangent to what Dave is suggesting. In the UK, we have one of the best health research resources potentially in the world, and that's the National Health Service. Yet we don't use it at all. We don't collect data appropriately about pain to do longitudinal studies. The measures that are in the system to assess the impact of pain are not really there. And we don't have access to all those data. So being able to tap the NHS, and just to give you for its research potential, and of course that is a national resource that would be for national benefit. To use the resource we already have there, but use it appropriately and measure things appropriately, the NHS would be my answer.
Could it agree more? I think these are two really important things that would certainly help us get a better insight. Now, maybe I have a utopian kind of thing. So maybe, and again, being a physio, I would try, could we see, could we invent the pill that would help people adhere to better lifestyle choices? Because we are all quite happily popping the pill for pain sometimes, including me. But the change in lifestyle is really difficult and adhering to it is very difficult. So if we could invent that, I think it might help us in the future.
I don't know how I'm going to beat these. I guess the challenge is how do we develop evidence-based, effective interventions to scale? Um, you know, we have limited resources, um, delivering interdisciplinary pain management is difficult, but there's a lot of people out there who are living well with pain and there's, well, we need to learn from them. We also need to think about early interventions and again, to scale. So I think that's not so much, I suppose I think these are more challenges that I see that I'm actually the big data sets. These are ways of addressing those things.
And beep cut.
Okay, maybe that is a very naive idea to have, but I'd also go in more sort of towards treatment. What I often hear is that patients don't feel listened enough to, and that typically comes down to the GP having 10 minutes for each patient, and maybe also relating to do we need more objective pain measures? Maybe we don't, maybe we need more time to talk to our patients, listen to them, and understand their individual pain rather than having them all on the same scale. Understanding the individual and see how we can take that on board when we decide what treatment is best for them.
I'm just going to add one final thing, which we've kind of touched on, but if we want really good pain research, we need to be training the next generation of pain researchers, whether they're pre-clinical scientists, whether they're physiotherapists, whether the doctors of tomorrow, we need to thinking about how we optimise that pipeline because training is both enthusing and training is going to be really important to deliver on that pain research.
And I think not only at the universities that are happy or lucky enough to have pain experts employed, but across the country, probably taking advantage of the different associations, the British Pain Society or European chapters of the ISP or the ISB itself to make sure that it's like across the board, so the standardised training in pain.
I think if I'm allowed to dream as well, and maybe this doesn't cost any money, I don't know. It would be to be able to empower patients to be more bulky and to ask questions, but to feel that they're being listened to, that we can expand the language around pain and be expected to really put ourselves forward and say what we need. I think to see that happen more and more would make me very happy. Yes, it probably would cost money because you'd want to open centres that allow patients, people with lived experience to feel welcome and empowered and feel that there isn't such that gulf between patient and clinician, but we are actually all in this together. Maybe that's a good way to round up Paincast for today. Thank you so much to the University of Reading. It's been such a pleasure teaming up with you. Thank you to my wonderful panel. Thank you for coming along and thank us for our wonderful production team who've been absolute stars. Thank you, Bretting. And that edition of Paincast was recorded in the Great Hall of the University of Reading on the 22nd of June 2025. Part of a whole day called Puzzle of Pain. Talks and demos, artwork and conversation. All bringing together members of the university, Pain Research Reading, the Painstorm research team and members of the local community. And thanks again to the university for hosting us. And to Rich Harrison and his team. And of course, thank you to our wonderful panel, David Bennett, Andrew Rice, Anina Schmidt, Ed Keough and Vibha Gandhi. You can find other editions of Paincast on the Painstorm website. Mark and I will be back next time to reveal some of what four years of Painstorm research has unearthed and what that means for those of us who live with chronic neuropathic pain. Until then. Goodbye and thanks for listening.