Jamie: Welcome, everyone. Thanks so much for coming to the first panel event in this three-part discussion on the principles that will underpin Wellcome's work on mental health. I'm so excited to introduce this panel event day, which is on putting lived experience at the heart of policy and practice. Please do follow and tweet using the hashtag for today, which is #WellcomeLEConversations. Just want to introduce and audio-describe myself for people who, for any reason, may not be able to see the screen. I'm Jamie and I'll be chairing the first part of this event today. I'm a lived experience advisor at Wellcome, currently based in Birmingham. My pronouns are he and him, and I'm a White male with brown hair and I'm wearing a blue buttoned-up shirt. Also chairing the second half of this event today will be Maisie who I hand over to now to introduce herself.
Maisie: Hi, everyone. Great to have you all here. I'm Maisie, I'm a graduate trainee at Wellcome, currently based in London. My pronouns are she/her. And I'm a White female with blonde hair wearing a white blouse and behind me is a grey wall, well, no, brown wall. (chuckles) Lovely to see everyone.
Jamie: Thanks, Maisie. For those of you who haven't engaged with Wellcome before, we are a global charitable foundation which uses science to solve the urgent health challenges facing everyone. Our vision for mental health is a world where nobody is held back by mental health problems. Moving on to some housekeeping now, this event is being live-streamed and will be recorded and shared after the session for those who can't make it. You are not on camera and your microphone is off. Closed captioning is available for anyone who wants to use it. If you want to enable this, please head to the settings on the bottom right-hand corner of your screen and switch the toggle on for closed captioning. If you lose connection and drop off the event, you can always use the same link just to rejoin. This session is going to be an hour-long and there are no breaks scheduled. If you need to take a break at any point, please do. Like I mentioned, this session will be recorded and we can share anything you may have missed afterwards.
We'd really love to hear your ideas, and thoughts, and questions during the session. If you have any questions, please submit them in the Q&A function throughout the event. When the speakers are talking, there's no need to wait until the question session at the end. Your question is for a particular speaker, please do indicate this. You can up-vote questions as well if you'd like them to be answered, and the most popular questions will be answered first. Questions will be moderated before they're published, so, please be respectful that everyone is at different stage of learning on this topic. As I mentioned, this is a three-part discussion on one of the principles that underpins Wellcome's mental health work. The second session, "Positioning Local Innovation as a Basis for Learning and Funding, is on the 7th of June." And the third session, "Envisioning Mental Health as Larger than Healthcare," is on the 14th of June. If you haven't got tickets already, the links book will be shared in the post-event email. We're very excited about sharing these principles with you and embedding them in our work, but we are not positioning ourselves as the expert on these.
We're also on a learning journey and really welcome your discussion and feedback. Without further ado, I will now introduce our speakers. Unfortunately, one of the speakers, Beck Smith, cannot be with us today, but we still have a fantastic panel with lots to discuss. Each speaker will introduce and describe themselves. I'd also like to invite each one to give a short answer to the question, what's the most important thing you've learned about lived experience? And what do you feel like you have left to learn? I'll hand over to Kate first, who'll also give a brief background on the history of these principles.
Kate: Brilliant. Thanks so much, Jamie and Maisie. And hi, everybody. My name's Kate Martin. I'm the Lived Experience Lead for Wellcome's Mental Health Programme. My pronouns are she/her. And I am a White woman with short dark hair wearing a black shirt and sitting in front of a white wall with a picture behind me just half in view. Yeah, these principles. Thanks for introducing them, Jamie. I guess why these came from, they're published in a report called "Expanding our Vision", which again, we'll make sure it's either put in the event chat, and we'll certainly make sure that's sent round in the post-event email. But where this came from is we understand mental health is a global health challenge and one that we must all work together to try and solve. And Wellcome came together with our colleagues at a number of other organisations, so, the Office of the UN Secretary General, UNICEF, the World Health Organization, World Economic Forum, to really think through what are some of the guiding principles that can inform our work to help address and solve mental health as a global health challenge?
So, as you said, Jamie, the three principles, I'll just repeat again briefly, are putting lived experience at the heart of policy and practice, positioning local innovation as a focus for learning a funding, and envisioning mental health as larger than healthcare. And I think one thing that drove all of us in our work to think through how we embed these is to think through how we can learn together, learn openly. And I guess these events are the first part of that, of us sharing our own thinking, but also a commitment for us to want to learn as Wellcome with our colleagues and friends across the mental health science community.
Most importantly, of course, with our colleagues who have lived experience and work alongside us. So, I guess it's really about thinking through how we use these principles to drive our work and learn along the way about what works and more importantly, sometimes about learning what doesn't. And then the question, the most important thing I've learned about lived experience. I'm sure we'll talk about this more later, but for me, from my own personal experience, my own lived experience, as well as the work that I do, learning and seeing mental health lived experience as a form of knowledge and expertise, not just experience and stories, I think has been a real shift for me, both in my personal experience, but also in the work that I do. And really not to say stories and experiences aren't important, they've really formed the knowledge and expertise that we therefore gain.
And I think seeing that lived experience is a form of knowledge and expertise really kind of repositions the kind of importance and the impact that can have. So, I won't go more 'cause I know we're going to talk more about that later. What have I got left to learn? This might sound like a bit of a cop-out answer, but the more I do, the more questions I have, the more I learn, the more I think I don't know. So, I think, what I'd really like to see is, and am really still passionate to learn more about, is how we can really make sure that lived experience expertise, it's just seen as just another form of expertise alongside all the other critical forms of knowledge and expertise in the mental health science community. That it's not either/or, that it's both hands, and how we bring all these different knowledges together to solve these health challenges. Thanks.
Jamie: Thanks, Kate. I'll now hand over to Meghna to introduce herself.
Meghna: Hello, everyone. I'm Meghna, I'm from New Delhi, India, and I am an Indian woman, a brown-skinned woman with long hair. I'm wearing a white shirt with red flowers on it, and in my background, there's also just a lot of colourful leaves and tree branches painted onto my wall. So, there's that. And yeah, I'm a lived experience advisor at Wellcome, and I'm really glad to be here.
Jamie: Thanks, Meghna. I'll hand over to Chantelle now.
Chantelle: Hello, everyone. My name is Chantelle and I am a lived experience advisor for the Wellcome Trust Mental Health priority area. I am connecting to you from the coastal city of Durban in South Africa. And my pronouns are she/her. As a description of myself, I'm a White woman with short blonde hair wearing a black-frame glasses, animal print jersey. And in the background, I have a framed photograph by a South African photographic artist, and a bookshelf, and a pot plant. It is so great to be here today. Thank you.
Jamie: Thanks, Chantelle. There's some great answers there. And personally, I think the most important thing I've learned about lived experience, simply how useful and important it can be when applied to ongoing research. I don't think I've ever heard the phrase, Oh, I didn't think of that, so much than when I'm using my lived experience alongside researchers and mental health projects, and I think that's a simple testament to how useful it can be. Anyway, I want to hand over to Maisie who will lead the discussion.
Maisie: Thank you so much, Jamie. And just briefly, I just want to come back to Meghna and just ask you the same question. I'd love to hear your thoughts on what you feel like you've learned, what you've got left to learn just before I open up more widely.
Meghna: I think the fact that lived experience in itself is so diverse, it's not just one thing, and it's never just one thing. Lived experience, because there's so many different people experiencing life and experiencing their world in so many different ways, the fact that there's so much more you can do, the fact that we know a lot, but we can learn so much more about mental health and mental health solutions that it boggles my mind, honestly. And that's also exactly what I'm looking forward to learning more about and just looking more at the practical implications of it and how we can actually get this to become a reality. So, I think that would be my answer.
Maisie: Yeah, no, that's a great answer. And Chantelle, I don't know if you have anything to add on that as well, if there's any personal reflections about what you've learned so far, maybe what you feel like you've got left to learn.
Chantelle: Definitely echo everyone's comments and thoughts on that. And I certainly think that the most important thing that I've learned about lived experience is that it shifts your focus and ideas on society in ways that is truly impactful. And my own experience has highlighted major societal challenges that we intentionally or unintentionally neglect to address, but it also certainly unearths a limitless scope of opportunities. And I think as everyone said, it is... No one on this planet knows enough about mental health, and so, there is certainly much more to learn and to research, to investigate, and to practise from. So, yes, a lot more to learn.
Maisie: Yeah, I think that's a resounding a lot more to learn from everyone, I'm really looking forward to learning from others as well. So, we can kick off discussing one question, which is probably very timely given that we have been discussing lived experience a lot. So, I think the first thing I want to put to you all is, what do we mean by lived experience? And Kate, it'd be great to get your thoughts on that first.
Kate: Great, I mean, it's just a small question to start off with then. (laughs) What is lived experience? I mean, I guess the first thing to acknowledge is that this isn't a new idea. There's been people, for an incredibly long time, particularly in the field of mental health and disability, who've really championed the kind of rights, the knowledge, perspective, of people with lived experiences. So, I think first of all, that it's really important to acknowledge the history that this has come from and through the great kind of work and changes that many people have made throughout the years to enable us to be sat here having these discussions now about how we ensure lived experiences would have embedded in mental health research and that we're building on the great work that's already out there.
For me, lived experience is, I think, as I touched on before in my first answer is, lived experience. And I guess the other thing to acknowledge also, is that there are all sorts of different terms that people use interchangeably. So, we are using the term lived experience when people have different words to describe it, all of which are kind of really fitting. But I guess just for us in the way that we're trying to think about lived experience and position like the work that we're doing, it's about seeing the knowledge, the expertise, the insight that having lived through and with mental health challenges brings people.
I think often there's a push for people with lived experience to sort of be restricted to telling their stories or their personal experiences. And not to discount that, not to say that's not important or not valid anyway, it's a really important part of the change and the understanding that needs to happen, but that from our personal experiences, mine included and everyone else in these calls, that having those experiences brings a knowledge and an insight. We don't have to share our personal experiences if we don't want to, because actually what it brings is a perspective and an insight in a similar way to all sorts of other experts, that are vital to help us solve the urgent mental health challenges of our time, whether that's scientific expertise, clinical expertise, community knowledge, the expertise held within the families and communities, people who've lived through and with mental health challenges, et cetera.
So, to me, it's knowledge, it's wisdom, it's insight. I'd really like us to get to a point where it's just taken for granted, that's just another form of expertise that we need in mental health, that's it's no different, it's just another form of really important perspective that we need to bring around the table to really make sure that we are, I suppose, having the widest field of vision on both the problems that we need to address, but also how we might go about addressing them and finding the best solutions, I suppose. It's such a big question. I know we could all talk about this all day, but I'll pause there and let others come in.
Maisie: Chantelle, do you have anything you want to add?
Chantelle: (chuckles) Yes. Thank you, Kate. You certainly did do a good job in tackling that massive question. I think you are entirely right that it does come with a long history of a lot of really strong world advocates and activists that pave the way for a lot of us to be able to voice our struggles and the way that we are presenting and projecting it into society and into public at the moment. And you can't even use the term without acknowledging that. It's interesting for me to see how this can become a legitimate expertise as opposed to something that is an afterthought or something that is only considered in some instances when the authoritative person deems it's important enough. And I think for me, if you think about lived experiences and think about what it actually means, it really is, you can't create anything without actually knowing what the experience was of that person who you want to create something for. And I don't see that should be different to in policy or in science at all. A company won't create a brand for somebody not to like it, and I don't think you'll do the same with art, creating something for someone to use it. So, that's a great description. That would be my add to that.
Maisie: Meghna, do you have anything you'd like to add on the definition? I know that Kate and Chantelle have really, it's a very hard thing to define. So, I'd be interested to hear if you had anything else to add or echo on any of them.
Meghna: More echo than add. But yeah, I think lived experience, it's just as simple as whatever a mental health researcher, for example, or any health researcher is working for, there is somebody who's been through it, there's somebody who knows what it feels like, there is somebody who has lived through it and is continuing to live through it. Lived experience is not just a past tense, it is an ongoing process. And I feel like that is something that is so valuable to research, even if you're just thinking from a very like utilitarian point of view, it is so valuable. (chuckles) And I just feel like it's something that's so important to cover. And as Chantelle said, it can't just be an afterthought, it has to be an integral part of research. That's my two cents.
Kate: I just think...
Maisie: Jamie, did you want to come in quickly on this as well?
Jamie: Sure. Once again, just echoing what all the other panellists members have said. I think one thing to remember about lived experience, whether it means going through your own mental health challenges, if there's a person close to you going through mental health challenges, you've been through services, or you've been through treatments, the people who have lived experience, they're not passive in that experience, they're very much, they have thoughts, they have feelings, and they have reactions to all these different things that they're going to. And that can produce unbelievably useful insight to mental health research.
Kate: Guess, just one more thing to add. You've really made me think then about a conversation I was having with some of the lived experience sort of leaders in the field and a really nice way that I think it was Jacqui Dillon phrased it, was that lived experiences that, that difference between one person's experience and the kind of collective that using lived experience expertise is about shifting from the I to the we. And what are the collective issues? As you say, Jamie, going through services, living with mental health challenges, living within our specific communities, whatever that might be, that it's not just our own experience that we hold, it's a knowledge about how could we change the system, what we improve, what the collective issues that we may experience about, I don't know, feeling powerless or feeling not heard, or the way that sort of certain parts of the system could improve, or change, or whatever that might be.
But I think people often think that lived experience is just about one person's story and then think, "Well, how has that ever going to be representative?" And as Meghna said, we all have very diverse personal experiences, but actually what we bring together with lived experience is often that kind of a collective insights from those bigger issues that we all may experience or have different experiences of. And to really think through how we can use those to drive improvements, I suppose, and shine a light on things that perhaps others may just not see, or perhaps may not always be kind of central, I suppose.
Chantelle: I think absolutely, Kate. And I think for me, working from a basis of lived experience really is also encompassed in a nuanced, you have a nuanced experience in something that you can apply to a certain set of circumstances or certain framework. And it would be a nuance that someone from the outside might not have experience in at all, and might potentially even miss a whole chunk of a system, or a process, or a functionality that could aid the whole process. And I think those nuances, you can't like teach it or learn it, even at university level, or online even, sometimes you certainly have to have a certain level of experience to know how something impacts you or affects you, or you know how it's going to improve something if that is what the outcome is looking like. So, I think for me, it's really about kind of nuanced experience and a nuanced knowledge.
Kate: Just one more thing actually, and Meghna reminded me of this, is that we talk about lived experience in shorthand, but certainly, I remember when our lived experience team first came together, our lived experience advisors, and we were trying to sort of think together about what lived experience means to us. And I think one of the things that came up a few times was "lived experience of what?" That we maybe need to get more nuanced in our language, that we can have lived experiences of our own mental health challenges of supporting others, both of those things that we... There's all sorts of different things that we're talking about. Are we talking about specific literature, specific context, or specific issues?
So, I think we need to get much more nuanced with our language. And I guess the other thing that came up was that we'd just had a really interesting discussion and I sort of think about a lot from my own position is if we see lived experience as a form of knowledge and expertise, then that knowledge and expertise can sit alongside other forms of knowledge and expertise, that I'm not just a person with lived experience, or just a researcher, or just a mental health practitioner. So many of us working in this field, whatever we're working in, have come to this for really personal reasons.
I think we've often kept people quite separate, or you're either this or you're this. And actually, seeing lived experience as a kind of a perspective, a form of expertise, means that can sit, of course, that can sit then alongside others. I am a person with lived experience, but I am also the Lived Experience Lead, and I'm also a researcher, and I'm also many other things that I won't go into, but it means we can have that as part of our identity, not as just the sole focus. And I think that's quite empowering for many across the system. I've certainly found that usually quite useful to think through and would really like us to sort of keep bringing that into the work that we do.
Maisie: Thanks, everyone. That's some really great discussion of that first question. I think some of you did touch on what I would like to come to next, which is on why is this principle about putting lived experience in the heart of policy and practice really important? And what are the key things that is just really important about this? So, Chantelle, it'd be great to get your thoughts first on this, but everyone else please do free to chip in as well as I know there's a lot to say.
Chantelle: Thank you, Maisie. I think stemming from like our brief discussion about the history and incorporating the history, it really is fitting that knowing that the voices of people living with mental illness or having experience with mental ill health, whether in caring positions or being cared for, have been undermined for hundreds of years. And yet we are still here in an era with the highest number of mental health issues identified in history. So, it really is a fact that politics and business have failed us, have failed to impactfully (audio garbles) of those living with mental illness in the very policies and practices that affect them directly. And this principle of lived experience is important for many reasons, but I would like to highlight a few points.
Number one, is that policies and practices that does not adequately involve the very same people it's deemed to help is not effective and it's not truly in the interest of its people. Involving lived experience experts bridges the gap between theory and experience for a more holistic and ultimately a more useful approach to policy development and its eventual implementation. By involving lived experience experts from the very start of policy development, to implementation, to monitoring and evaluation, in a variety of roles, develops leadership in mental health that will facilitate a positive change in attitudes towards people living with mental ill health. And this could also help to reframe societal stigma. People with lived experience have skills, knowledge, and creativity beyond just the experiences, like Kate just mentioned, and getting them to engage and fully apply the expertise can be of immense value to the efficacy and sustainability of a policy, and/or a practice. And then lastly, the success of a policy or a practice is fundamentally reliant on community. And a community base its trust on the knowledge and understanding of how a policy was developed, of who developed the policy, and how the policy will impact them.
So by ensuring people with lived experiences' contributions, skills, knowledge, and expertise are included, this trustworthiness can be reinforced and ultimately create a desired impact. And listen, like, mental health as a service, as a structure, or a solution, has a lot still to develop and achieve in every country around the world. Not one country, province, district, or community, can claim to have their mental health policies and practices fully in line with the current and relevant needs of their people. And I certainly think that politics and business need all the help that they can get to make sure that they are building the most impactful kind of policies and practices and that can only do that with involving the right people. And it's the people that they want to develop this for. That will be my intervention on that.
Maisie: That was very, very...
Jamie: Well, I think...
Maisie: Sorry, Jamie, you come in.
Jamie: Oh, I was just going to say, I think Chantelle just hit every nail on the head and got every absolute bang on. I think the important words that Chantelle mentioned were legitimacy, relevance, and bridging the gap between theory and practice. I think it's so easy, no matter how conscious you are of your surroundings and people around you to get stuck in your own way, your own routine of doing things and just forget what's actually happening on the ground. And I think that's how the lived experience feels.
Maisie: Sorry, Kate, you're on mute. (laughs)
Kate: I knew it, I knew it, that at least once a day, I'm going to do that. I've got it out of the way. There we go. I'm not sure I can repeat the absolute pearl of wisdom that I said, but I said, I think for me, I just guess why wouldn't we? And I think, I mean, Chantelle, thank you for such an amazing answer. I think you've hit every nail there. But I guess just to reinforce, I suppose, that we need, if we're going to solve these incredibly complex challenges that face us, we need as many people, as many perspectives as possible to help us do it. I think there are all sorts of forms of expertise that we need to kind of elevate in the field of mental health that perhaps haven't been heard as much, lived experience being one of them, but certain disciplines that have a really important role to play, but perhaps haven't been assigned as they should be.
And I think the importance of lived experience expertise is, it's about making sure we just have the richest understanding of the problems we're trying to address and the solutions that we're trying to create. I think there's often, I think, this false sort of thought about lived experience that it's either no lived experience expertise at all, it's all kind of research and clinical expertise, or it's all lived experience expertise. And it's like it's not, it's not that, that's not the case, it's both, and this, how can we come together and have the widest field of division, the best perspective on these problems, the best ideas? And as Jamie says, I mean, I absolutely echo what you said in the first question, Jamie, the number of times we hear, Oh, I hadn't thought of that.
And often when we talk to the researchers that we've been funding recently, some of the feedback they give is, working alongside colleagues with lived experience wasn't necessarily loads of new ideas came up, but looking at the research, it really prioritised some of the variables or some of the factors that perhaps they would have dismissed or overlooked. So, it isn't always about new knowledge, although sometimes it is, of course, but it is about saying, "You might have de-prioritize that, but actually from this perspective, this is a real priority."
So, it's just about making sure we're making the most informed decisions, I suppose. And if we start to look at it like that, I think it becomes, I guess, nonsensical not to do it. Although I would add quickly that I still think we are learning as an organisation and as a community about how best to bring different forms of knowledge and expertise together. And I think something that we all need to do is, as a whole community, is really understand the power dynamics, the ethics behind this. How best do we really ensure that we are doing this in the most ethical and meaningful way, and that we're not just going into this naively, that we are really thinking about the dynamics, what works in terms of making sure this is the most meaningful and ethical way of working together.
Chantelle: I think I wanted to just highlight the point of stigma as well in this conversation. And the reality is that the whole point about lived experience is that you are subjected to things that people have never been experiencing before. So, you're subjected to horrible experiences and stigma, and stigmatising behaviour towards you for an illness that you didn't ask to have. And I think certainly, the idea is that if we create leadership within mental health, if you stimulate the whole idea that people with lived experience have expertise that is valuable, that that could certainly add value to the broader society. And certainly, I wanted to highlight that change in stigma and how we perceive people with mental illness.
Maisie: Thank you for that, Chantelle. That is a really important point to raise. I just want to see if any of the members of the panel want to come in before we move on to the third discussion question. Feel free to come in now with any final thoughts. I know it's like there's a lot to say, and I think Chantelle original comment really covered it well, as Jamie said as well. Okay, so, I'll move on to the next question. And I know we've had a few questions come through in the Q&A about this as well. So, hopefully this will help address that, which is, what does good practice on this principle, putting lived experience at heart of policy and practice look like? Meghna, it'd be great to get your thoughts on this first.
Meghna: Hmm, so many thoughts. So, I think good practice of involving lived experiences in work is actually making it meaningful, like that is the most important part according to me. Lived experience, a lot of the times when people talk about lived experience in research, they usually talk about lived experience advisors as perhaps the consultant they'd use at the end of the work to get some additional advice and then discard it if they don't feel like it fits. There are also times where they might just use lived experience advisors as somebody who would, just a second. Sorry, yeah, so, often lived experience is also reduced to stories, it's reduced to people talking about their trauma as a powerful way of taking the stigma. And it is powerful, but lived experience is not just stories, lived experience advisors have a lot more to offer than just their trauma. They also have strengths, they also have what helped them cope.
And it's necessary to involve that and not just involve that as a final tick mark that, "Oh, we just checked this with the lived experience advisors." Have lived experience advisors at every level in the research, have them when you're forming your research questions, have them when you're doing your literature review, have them talk about, "Hey, this is an aspect that you might not have covered. This might be important to your study. This might be a means of mental health solution giving and caregiving that we haven't looked at." Involve them in all different levels and not just as a final check, for one. And normalise it. It's a job like every other job. So, pay them, have a hierarchy. If for other research associates and advocates we have a senior and a junior, we should have that for lived experience associates and advocates. And involve them in actual work.
Trust me that everybody with lived experience does want to talk about what's going on and what would help, everybody wants to help, so, actually use them. I think Grace said this once, use us well, pay us well. So, there's also that. And often a lot of the times we don't involve lived experience because one, it's a direct challenge to the existing power dynamics in the research community, it breaks the patient and doctor kind of relationship because if the patient is an expert, then you have to be collaborative and you can't just instruct somebody on what to do. So, I think that is really important. Just a second. I'm sorry, my mother's right outside my room, but And I think often lived experience advisers are also disregarded because they don't have the appropriate training, but I think training is not something... Like, research, nobody's born a researcher, they're not born knowing that this is what I have to do. It's a process, it's a skill. It can be learned, taught, or at least we can direct them to the resources that can help them do so.
I think good practice looks like skill building and being mutually inclusive and not just tokenistic involvement, making sure that your lived experience advisors are also from a diverse range of backgrounds, if not necessarily like from different countries, then at least from different backgrounds within the community that you're working for. So, include people from different socioeconomic backgrounds, castes, religions, anything can go. But you have to listen to the voices and you have to understand the power that they hold and realise that it's not just a story, it's life and it's experience. And yeah, that's my point.
Kate: I've got so much...
Maisie: Thank you, Meghna...
Kate: Oh, go on, Chantelle. Back to you.
Chantelle: (laughs) No, that's perfect. Thank you, Meghna. That was really brilliant. And I think these practices of involvement is, again, quite nuanced. The thing is there are different levels of involvement as you would in any research project. And there are levels of involvement of where the person of interest or the person being investigated will be the person living with a mental illness. But if we're talking about lived experience in a way that we're talking about it today, and it really is trying to incorporate them, like Meghna said, in different stages of that process.
And I can tell you from experience that they are people who have reached out and was able and willing to put me in front of certain projects and involve me because they know of my experiences and my skills and my expertise that I had in different settings, and that has taken the time to actually invest in me and being able to nurture the skills and the talents that I have beyond just my own diagnosis with mental illness. And it's an amazing thing when you feel like you've got purpose and you feel like you are part of something bigger.
And it certainly helps with that person's journey, it helps with like growing that person, again, creates a leadership, but it also, you can also allocate those tasks to different kinds of people with different skills. It means you can get somebody who's lived with a mental illness to do website design, or maybe you need to do a brochure for your project, maybe you need people to speak to data, or maybe you need to display of something.
There are so many small roles that you can allocate in your research team to people with lived experience that will have so much better, like insight. They'll look that in a way that would actually feed back to the participants in an effective way. So, I think we need to, for me in this forum, we just need to be creative and we need to think broad, and we need to, or we can creatively apply people's skills beyond just the fact that they have experience in their own experience with mental health issues. Kate.
Kate: (laughs) Thanks, Chantelle. Oh, and thanks to Meghna, both really rich answers which I really agree with. I think to echo what you were saying about... I think often we start with "How do we..." Our first thought is often, How do we involve people? when we focus on the methods of involvement. That's not normally how we plan projects. Normally we go, "What's the project doing? How do you break the project down? What expertise or inputs do we need along the way, right? How do we build the team around that?" et cetera. And I think it's the same with involving people with lived experience. If we're really going to do this meaningfully, going back to your point and your call, Meghna, how do we do this meaningfully?
It's about understanding, well, where are those decision points? Where is the power? Where can the change happen? How do we get people involved day to day in the kind of nitty-gritty stuff that often isn't exciting or the stuff we can shout about externally? But actually, that's where the magic happens because we have got a long way to go within our team, but some of the things that I think that are making a difference are just having people with lived experience, lived experience consultants, lived experience advisors as part of our team, not just advising from a lived experience perspective, but working on some of our communications, funding projects, some of our lived experience will have a Wellcome email account. So they aren't just sitting on our normal team meetings.
Those things might seem small and mundane, but they're kind of hard to undo once they're there. And it means that people can play on an equal footing. People don't have to rest on me giving them access to certain information, they're just there to able and access it so, like any other team member. And I think in terms of the practicalities and pragmatics and the relationships that we build, the more that we can just see people and support people to engage as colleagues and as any other colleagues would, then I think we really open up possibilities. But that means focusing on some of the boring stuff to get there.
But that's where I think some of the power shifts. And really quickly, just to build on your point about support then for people with lived experience undertaking these roles, that we need to really make sure that people feel supported both in terms of not just in using their lived experience, but we can't just suddenly take people with lived experience and go, "Right now, now advise this powerful project with all these other influential people," et cetera. We need people, it's just not to patronise or undermine, but in any other role, we support, we mentor, we develop, we coach.
And I think that's exactly the same for people with lived experiences, is how do we help people understand the context they're working in, understand some of the dynamics at play, really think about how they can use their expertise the best they can in these projects, et cetera, and learn together as a community the best way to make those things happen and to learn about things you might need to stop doing, because they're unhelpful. But I think that's a real critical learning point for, I'm certainly taking on in our work as Wellcome and would like to work with other colleagues on is really thinking how to do this the best, the most ethical, meaningful way as an organisation, but also in terms of supporting our lived experience colleagues.
Jamie: I just wanted to reiterate a point that Chantelle made about how there is different levels of involvement. I think that as Kate said at the beginning, we're still in the learning process, we still don't know the exact way to best involve lived experience, and it can be very small things and it can be very broad things.
From my own experience, when I started using my lived experience in mental health research about a few years ago, we would only meet with a researcher on a specific project, one time throughout the whole study. And now, they tend to want to meet us at specific stages, so, four or five times throughout the study, but maybe it can be little things at the start like they are asking us, "What's the best way to approach participants?" which seems like a really minor thing from on the outside, but it can have a massive impact on say, the findings and what information those participants give. And then maybe they write up a report or they write up an introduction and they come to us and say, What do you think of this? And from my perspective is that...
I'm not a researcher, I have my lived experience to give, but I'm thinking, "Are they just asking me this as a tokenistic thing?" And always, I think they're not actually going to listen to me, but every time they always say, and the report or introduction always gets altered to exactly how and adapted to how the input we did. So, I think that shows how important and useful lived experience can be. And I wanted to touch on as well, a point that Meghna has said about how it might be perceived that people with lived experienced don't have the skills or expertise necessarily to be included in research.
And all I want to say on that is that people with lived experience, I think, by being in the room or over a Zoom call with a researcher, getting involved, I think that's enough to show that anyone, and I can 100% guarantee that anyone with lived experience getting involved with research are so eager to learn and so eager to find out more things, and it's a learning process as you go along.
Maisie: Thank you so much, Jamie. That's been a great discussion on that question. And we only have about 15 minutes left. And luckily the final question I was going to ask you does also tie into some questions asked in the Q&A as well. So, I'll kind of bring that together. The one I was going to ask is, how do we track if an organisation is achieving this principle in terms of putting the experience at the heart of policy and practice. But also, how can we provide insights on this as well? So, one thing just before I put this question to the panel, please do take a look in the Q&A and up-vote any questions which you really want to get asked. We are, as always, struggling for time, so, it'd be great to ask the most popular questions now. So, yes, Kate, I'll come to you first on that one on how can we track if an organisation is achieving this.
Kate: Sure, yeah. Well, I guess the first thing that jumps to mind is, I think we still need to learn the best ways to do that. Just as we're learning the best ways to involve and work together genuinely, I think we still need to think about how best then do we really track the impact and the sort of effects of that and how do we make sure that we're not treating... We don't want it to the impact of other colleagues, so, how do we make sure we do that in a meaningful way, I suppose, how do we make sure that we're co-designing that together?
Number one, that we're... I guess, the first point would be, how do we work together with our lived experience colleagues to understand what is it we're trying to track in the first place? What difference do we all hope to make together? I think often some of the most important things to track are some of the hardest things to track, like shifts in attitudes, or there are some things that are really concrete. We can say, for example, yes, our lived experience advisors made decisions on these funding applications. It's a really concrete thing to be able to track and change. If our lived experience colleagues are in all of our team meetings, all of our meetings about projects and we are forming knowledge together, it's really hard to then disentangle what difference that's making.
So, I guess then it's about trying to understand, are people just embedded in our organisation on a day-to-day basis? Do people feel like they're involved in decisions, Do people feel influential? Because a lot of this comes down to, particularly if you're not involved or not involved as much as you want to be, comes down to a feeling more than a sort of a tangible discreet output. But then we need to develop these things together. I think going back to the previous question, it is about saying, if you're looking at the breadth of the work of an organisation, the breadth of work of a research project, are people involved in multiple stages in multiple ways and taking on multiple roles?
And then within that, what's the experience of that? Do people feel like they are being tokenised or do people feel like they are part of a team? But I think this is a really critical area for us to really think about together, like, what is it we actually want to track here? Because I think the risk is that we slip into proving that we should be doing it when I think that's a given, it's more about proving how we do it best, I think, is the slant that perhaps we may need to focus on.
Chantelle: I think that's great, Kate. I wanted to just add that I think it does boil down to a general practice as opposed to a set of rules because I think the rule book will slightly change depending on where you apply it to, right? So, I think it should be a fundamental practice of just understanding that involvement of people with lived experience is an element that should always be considered. How it would be considered would absolutely depend on the scenario, the situation, how that everything is put to the front.
So, I don't think it is quite possible to have a rule book of how to do this as broad strokes. But I think, like Kate said, in our work together and exploring some of these topics and kind of discussing what that potentially can look like and whether it can actually work and whether it is something you can formalise into something more tangible to be able to give to a company, organisation, a political party, university, to say that this is how meaningful involvement should look like, there are a lot of examples already, there's no shortage of examples. I think it is really just to ensure that the ethos of this concept is instilled in your practice and kind of facilitating what that would look like with the people you want to do it with, which is, yeah, that's my answer there.
Meghna: I actually wanted to add. So, I mean, there's a lot of questions on how do we measure it in research, how do we measure lived experience in terms of research? One is I feel like the simplest is qualitative studies and case studies are just as valid as quantitative studies. In fact, I feel like when we're trying to look for a solution that fits a lot of people, we do miss out on nuance. While like everything's not going to work for everything, but some things do work for some certain group of people. So, actually more focused qualitative studies there could give you more depth of knowledge and you can have breadth of knowledge with quantitative, right, that's basics. But I think focusing on that, and taking feedback.
I think lived experience can be used to guide research. It can be used to guide us on where to go rather than whether this is working or not. I think it can help us open up possibilities and like the scope of research a little more. And I think that is one way where you can see whether the organisation is actually involving lived experience in the research as well.
And the other thing is, you have to look at who's speaking. For example, are the lived experience advisors speaking for themselves about the work they do, or is somebody else speaking for them? Do they have a voice? Do they actually have a voice in telling everybody what's going on, or? Again, different levels to it. So, I feel like those are some ways where we can actually have a system of checks and balances to see if lived experiences are part of research or not.
Jamie: I think that word that Meghna you just used as a guide, lived experience is a guide to research is really good and spot on. I also just wanted to add that obviously it is a learning process and we still don't know the exact way. And I think we want to hear your feedback as well so it's a mutual flow of feedback and information. And even if you think that maybe we've involved lived experience in quite a trivial way, and it's actually worked, then we still want to hear that. And anything that just because it is true or you think it may be tokenistic, it might not be to us. And I think it's important that we hear absolutely everything that does work and absolutely everything that doesn't work.
Kate: It's a really important point, Jamie. And I think just to sign post, and we'll make sure this is in the email as well, but our colleagues in the Education and Learning team at Wellcome, which did really great review led by Dalberg about looking at what the evidence is for involving young people in research across the three challenge areas at Wellcome. So, some really great examples in there of actually how to do it. And I've noticed in the chat, in the questions, there's a number of questions about the how. Again, I think they're really important questions.
I think as a community, we're still learning the how, and particularly in different forms of, different areas of mental health research. I think in some areas it's much easier or the approaches are much more normalised than others, I think the practice is evolving. I think the overriding thing though is just about focusing on not starting about how we're going to involve people, but focusing on what is it we're doing, like breaking down projects into some really small parts. Like, I was really blown away by all of the research teams that we funded to review the evidence of the active ingredients in the past years. We'll put links to that in the emails as well so I don't go into that into too much detail now, but many of these teams, they were doing reviews of existing evidence.
That's harder to think about how to involve people than perhaps other forms of research. And I was really blown away with the thought and the detail and the insight that all those teams brought about vetting the research questions together, thinking about search terms for the review, doing the literature review, pulling out the evidence, making meaning from the evidence, et cetera.
They really just broke down the projects into their constituent parts and then really thought at each stage, "How can we bring people together to do this piece?" So, there isn't one answer to how to involve people other than, I guess the thing I've learned the most is just about starting with, "What are we going to do? What are the decision points? And what's the thinking? And what's the kind of knowledge production or what are the brainstorming, and how then do we best come together?" And I think that's when you start to get a real sense of meaning because we're fitting the way that we're working together to what we're trying to achieve rather than having this kind of mismatch often, which I think is often the case if we sort of start the other way around.
But still loads to learn, I'm really keen, as you said, Jamie, really keen that we see this. And yeah, that's what these discussions are about, these are learning conversations about saying "We don't know it all." I don't think anybody knows it all in the sector, but there's some amazing practices to learn from about what's worked and what hasn't, and we're really keen on that and sort of advance our learning as a whole community.
Maisie: Thanks, Kate. I'm really aware that we're running out of time. And what we will do is we will save all the questions and we'll find a way to try and get some answers to those. I hope that some of them have also been answered during the session. But I will just put one quick question to the panel and I'm sure there is a few different answers for this one that spring to mind, but the top one is, "Do you have any advice on ensuring people with lived experience feel like their time and input is being valued. Example: how to make this a mutually beneficial experience?" Does anyone want to quickly comment on that in the last couple of minutes?
Kate: Are we all being too polite now?
Meghna: Can I just say, please pay your advisors, (laughing) please pay your advisors. If they're experts, please pay them. And also compensation in any other form and exposure is not always a valid form of currency. I'm sorry, I'm just talking to Indian psychologists. Okay, I'm going to go. (laughs)
Kate: (laughs) I would echo that. If we're seeing people taking on meaningful roles, they should be paid for those roles. We should be offering people development, and like we all expect in the professional roles that we undertake. I often try and take a step back and think, "What gives any of us meaning in the work that we do?" It's having responsibility, it's feeling heard. It's not always getting our own way, but it's knowing our views have been taken into account and that we're part of creating something together, that we are rewarded for our time. And I use that for the wrong phrase, but I don't just mean pay, I mean, support, development, encouragement, growth in your role. I think one thing actually, one of the first projects I worked on, we were really sort of tussling with what this means is, we really learned that we really get a value not just when we learn to agree and work well together, really get value when people really feel heard when there's been disagreement or difference of opinion.
And it's not about whose views wins as such, it's about, did everyone feel heard? Did they feel it was fair? Did they feel that we reached a consensus, even if that consensus wasn't their original hope? And I think that's a real test and one that I always try and hold in mind is not just trying to work well together, but what happens when we disagree, what happens when there's differences of opinion? Can we still make sure everyone feels heard and understood? But I think, particularly about lived experience involvement, I don't know if there's much difference to feeling meaningful and valued in the role of input than any other role, responsibility, input, pay, support and development, being part of a team like any other.
Meghna: I just want to add
Chantelle: Can I just add... Like all of that, all of that is absolutely true. And I think it really could be a simple exercise as to putting yourself in the shoes of that person. If that person had to spent time, and energy, and expertise, and if they had to spend all of that on a project that you were involved in, or if you had to spend that for somebody else, what would your expectation be and how would you want to be involved in and would that be sufficient? Would you be okay with not paying yourself or would you be okay spending hours on something that you are not getting a value exchange for? And I think you really need to step into that person's shoes for a second and think what that position would look like and why that person would do that and kind of take it from there.
Meghna: Additionally, also, just, sorry, sorry. I just wanted to say that when the project ends, share the results, share the results, share with them about what contributions of theirs helped shape what. Some transparency regarding that could actually help see the value in your work and your contributions. So, perhaps that could be a small measure we could start with. Go ahead, Jamie.
Jamie: No, it's okay. I hadn't thought of that point at all, Meghna. And that's so important.
I think about people with lived experienced could have such a big sense of fulfilment and purpose when they are involved in research and that encourages them to get involved more or think about it more, learn about that more. I think we've touched on some things like pay and perhaps including them in the author list on a paper or something. And those things might be really small for a researcher, but it could be massive for the lived experience person to boost their confidence, encourage them to learn, be involved more. And also just from a researcher's perspective, the lived experience person, it's a very new thing and not many people know about it. When I talk about "I'm involved in research" they think I'm a participant. When I say, "Oh no, I help them with much more than that," it can come across as quite an impressive thing and people with lived experience are so keen to help get involved and listen to anything they can learn and use that like a process and adapt.
Maisie: Thank you so much for that, Jamie. And that's a really nice note to end on because we are out of time and also ran over slightly, which is always the way with discussions on topics like this. So, I just want to thank everyone for coming and for your questions. And like I mentioned previously, we are going to make a huge effort to try and copy those out and try and get some answers to ones that haven't been addressed as well.
This is the first time we've run these panel discussions publicly. We would really appreciate your feedback. My colleague is going to put a link to a survey in the chat, but that will also come to you in the post-event email, which should be within the next day or so. So, yeah, thank you all so much for coming and we really hope to see you at the other two events to continue this conversation on these principles as well. The next one is on Monday, the 7th of June, and the final one is on the 14th of June. And I'd also like to just thank the panel for their really great discussion and answering all the questions as well. So, thank you very much.
- Co-Chair: Jamie Morgan, Lived Experience Advisor, Mental Health team, Wellcome
- Co-Chair: Maisie Jenkins, Graduate Trainee in the Lived Experience team, Mental Health, Wellcome
- Chantelle Booysen, Lived Experience Advisor, Mental Health, Wellcome
- Kate Martin, Lived Experience and Public Engagement Lead, Mental Health, Wellcome
- Meghna Khatwani, Lived Experience Advisor, Mental Health, Wellcome