Shuranjeet: Good morning, good afternoon, and good evening to everyone joining from around the world. And thank you for coming to our second panel event in this three-part discussion, on the principles that will underpin Wellcome's work on mental health. This event is on the principle of positioning local innovation as a focus for learning and funding. My name's Shuranjeet Singh And I'm your host and chair for today.
Firstly, I'd like to briefly introduce and audio describe myself for people who for any reason may not be able to see the screen. As I mentioned, my name's Shuranjeet and I'm a lived experience consultant here at the Wellcome Trust. I'm currently based in Birmingham and my pronouns are he, him. I'm a Sikh man with a black beard, wearing a Grey turban, sat in a lovely beige room.
For those of you who haven't engaged with Wellcome before we're 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. Now we're just going to go into a couple of small bits of housekeeping before jumping into speaker introductions and then into the event itself. So this event is being live streamed and will be recorded and shared after the session for those who can't make it.
As the audience, you're not on camera and your microphone is off. So don't worry about anything from your side. 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 use the same link you joined with, to rejoin again So this session is going to be an hour long and there aren't actually any breaks scheduled, but if you need to take a break at any point, please do.
As I mentioned, this session is being recorded and we can share anything you may have missed afterwards. Throughout the session we'd really love to hear your thoughts, ideas, and questions. If you've got any questions, please submit them through the question and answer function throughout the event when the speakers are talking, There's no need to wait until the question session at the end, as we can collate questions as the session is going along.
If your question is for a particular speaker, please do indicate this in the question itself, because it helps me as the chair to then be able to direct that question to a particular person. If you want to see particular questions be answered, you can click upvote, which means that they will be higher on the list. And the most popular questions will be answered first. Questions will be moderated before they're published. So please be respectful and appreciate that everyone is at different stages of learning on this topic. So just before going into intros, as I mentioned before, this is a three-part discussion on one of the principles that underpins Wellcome's work on mental health.
The first session, putting lived experience at the heart of policy and practice, took place on the 2nd of June and we're shortly going to be showing the recording of that. And the third session envisioning mental health as larger than healthcare will be taking place on June 14. If you haven't got tickets already, the links to book will be shared with you in the post event email. we're very excited about sharing these principles with you and embedding them in our work, but we're not positioning ourselves as the experts on these. We're also on a learning journey and really welcome your discussion and feedback as we are all walking through this process together. And for those of you who are on Twitter, please do follow in tweet using the hashtag for today, which is #LEconversations So without further ado, I'll now hand over to each of our panel members who will introduce and audio describe themselves. First I'd love to hand it over to Dhriti.
Dhriti: Hello everyone. My name is Dhriti. I'm currently a lived experience advisor here at Wellcome. My pronouns are she and her. And right now I'm based in New Delhi, India. I'm a brown woman with black hair wearing a blue top in front of a wall, which is rust-coloured and has screen blinds.
Shuranjeet: Awesome, thank you so much Dhriti. And I'd like to hand it over to Grace.
Grace: Hi everyone. My name is Grace Gatera. I'm currently in Kigali, Rwanda, and I use she, her pronouns. I am also a lived experience advisor working with these wonderful colleagues within the mental health priority area. And I'm a black African woman with short dreadlocks sitting in front of a beige background with a bit of curtain peeping through. Very happy to be here.
Shuranjeet: Awesome. Thank you, Grace. We are very happy to have you here too. I'd like to now hand it over to Jazz.
Jazz: Greetings earthlings. My name is Jasmine, Jane or Jazz. I'm a lived experience advisor at Wellcome, based in Nottingham. My pronouns are they or them because I identify as gender fluid. I am a mixed race person. I have curly dark hair in a bun. I'm wearing a black t-shirt with coloured flowers on it and in the background you can see my bedroom with my art. So thank you.
Shuranjeet: Awesome. Thank you so much, Jazz and last but not least Rhea.
Rhea: Hi all, I'm Rhea Newman and I'm a policy and advocacy advisor in the mental health team at Wellcome currently based in London. My pronouns are also she, her and I'm a white woman with brown hair and I'm wearing a black top with some white flowers on it. And behind me, you can mostly see [Unclear] tools in our spare room. You might be able to see a bit of a mirror and a picture on one side as well. And my white and fluffy grey cats may also make an appearance partway through as he seems to be hulking around this morning.
Shuranjeet: Awesome. Thank you, Rhea. And thank you to all of the panellists for sharing your time and expertise here with us today. I'm really excited for the audience, but also for me to constantly learn off all of you as I do whenever we talk. So first I'd like to invite Rhea to give us a bit of a context and background to the principles that we're discussing in this series, just before we enter into the first round of questions for the panelists.
Rhea: Great. Thanks Shuranjeet. And to give you some background on these three principles that are forming the basis of the conference over these three weeks, as I may need to tell all of you, but COVID-19 has brought significant challenges, for many people around the world with their mental health, and we don't think it's caused a new mental health crisis, but it has certainly pooled many existing challenges and expanded those challenges for many people around the world who are struggling with their mental health. But as well as bringing challenges, we think COVID-19 has also provided a really great opportunity for us to learn more about mental health and about how people are responding and how people are coping with all the disruption and all the additional challenges they have faced as a result of the pandemic.
So last summer, Wellcome wanted to take a bit of time to reflect on what we could really learn from this period and what it might mean for our work on mental health, in particular, the work we've been doing around youth anxiety and depression. So we started some conversations about this with some of our global partners who we work closely with on mental health. So the world health organisation, the world economic forum, and UNICEF. We want to just take a bit of time to reflect on, okay, what can we learn? It was really important for us to make sure any learning was really grounded in the experiences of young people all over the world. The first thing we did was we commissioned two projects, looking at how young people were responding to and coping with COVID-19 particularly individually, but also collectively.
So the first of those projects was called collective resilience and explored how people have protected their mental health during the COVID-19 crisis. And that looks at things from individual self-care to time spent in nature, time with family and friends, volunteering to collective action, social action, et cetera. And there's a whole variety of different ways that people were trying to respond to look after their wellbeing during this time.
The second of the projects, COVID living, which we did in partnership with an organisation called (indistinct) and look to capture how young people around the world were looking after their mental health and how we could share some of these experiences. So they experimented in finding different ways to share how people were coping, ranging from things like using WhatsApp, and Zoom, but also writing letters to your future selves. And two really big learning points that came out of those projects. That's what we say. These weren't really robust scientific studies.
They were very much kind of looking at just what we could learn from a collection of experiences, but there were two big messages that came out. One was that they really highlighted the innovative ways that people were finding to look after their mental health and wellbeing and how that was really driving local innovation, both in communities, but also at a bigger level. And the second thing was how the things that were helping people were so much wider than things necessarily to do with health care.
So taking those two learning points, Wellcome together with the world health organisation, world economic forum, and UNICEF wanted to put three new principles at the heart of all our work with mental health, that really kind of encapsulated what we've learned. The first of those principles, Shuranjeet talked to us all about putting lived experience at the heart of policy and practice. Those of you who joined us for the event last week would have heard more about that.
The second was about positioning local innovation as a source of learning and funding. And that's what I'm really excited to be talking about today with Dhriti, Grace, Jazz and Shuranjeet. And the third one is about envisioning mental health as larger than healthcare. And over the course of the next kind of four and a half years now, we are going to be coming together with those partners who committed to putting those principles at the heart of their work, to share kind of how we've been doing that, what we've learned from that and what more we can be doing.
And at every stage we will be doing that with our lived experience versus other young people with lived experience. And as Shuranjeet said, I think it's really important to emphasise that we don't have all the answers on these. This is really very much a learning point and we're keen to be sharing the learning all along the way. And hopefully these events are a good starting point, but sharing some of early thinking, hearing your questions and your feedback. I'm really excited to see how the discussion progresses. I'll hand it back to you, Shuranjeet.
Shuranjeet: Awesome. Thank you so so much Rhea. And to jump into our questions, you know, the title of today is positioning local innovation as a basis for learning and funding, and I'm going to be blunt. So for our panelists, why does this principle matter? I'm going to throw that over to Grace because Grace looks like she wants to answer that.
Grace: Thanks, Shuranjeet, I think that this principle, to me I think this principle matters most amongst all principals, despite I really liked the others, but this is my favourite one, because I think that Wellcome has committed to what works for whom and why. Right? And the big part of this, a big part of this means looking at, you know, going deep into what works in terms of, you know, generally, but also in terms of different populations now. In history or in the past, this, sort of principle of what works for whom, this sort of way of looking for remedies, for approaches, to support people with lived experience or to support people who are going through mental health challenges, has been heavily westernised, to the point of sometimes we clearly overlook solutions that, you know, [Indistinct].
And there's still, even when we know that they work, there's no funding to explore why, and there's no support to sort of look deeply into this. And so for me, they matter to me because if we are to bring forward a next generation of approaches to support our young people, it is very important to look locally and to look contextually and to, involve different factors that have gone. Like basically I am a young black African woman. What works for me is not going to work for Rhea based on where we are, based on our culture, based on our upbringing and based on where we want to go in the future.
And so I don't understand why Rhea and I, would be offered the same sort of Western, you know, approach the same sort of like maybe therapy or this. I'm getting passionate about this, so I'll wind up quickly. But I just think that, you know, it matters to me because if a funder is interested in looking locally at ways to support people, then I can definitely see a future where all of us are included, not just people in high income countries. I'll pass it back to you Shuranjeet.
Shuranjeet: Thank you so much, Grace, and you know, really challenging and naming those processes of exclusion, which have historically been developed over the last several centuries. Would any of the other panelists like to come in on this question about, you know, why this principle matters? Jazz.
Jazz: Hello, thank you, Shuranjeet. Yeah. I'd just like to build on Grace's great point about the differences in context and why it's so important that we learn from existing practices in society that are already helping people. Now I am going to share a statistic, the nature of it is quite triggering, or it might cause distress to some people. So I'm sorry about that. But basically 800,000 people every year commit suicide. And that's four people per second, roughly. And that is absolutely disturbing. And this is a result of the poor health and mental health system and society that we live in. And this is why we are doing this work, because it's so important that we share awareness of mental health and provide support to as many people as possible around the world.
My father had bipolar disorder and not so long ago, he lost his life. And I believe this was due to a poor quality of care in the health system. And I believe that they failed him and I feel like his death could have been prevented. And the death of many people around the world could also be prevented, but due to a lack of funding and education, people are not getting the help that they need and they're suffering in silence. So this is why we are so determined to try and learn as much as possible and provide help to people. And we're doing it by learning about existing practices.
So, yeah, for example, a group in Nottingham in the UK is called the MH:2K project. And it's a local project, which has actually been developed with funding from the Wellcome trust and empowers 14 to 25 year old volunteers who've had experience with mental health to have discussions about it, to engage their peers and to work with local decision-makers. And we actually lead the research, young people who have actual experience lead it. And it's so important because most of the research that is conducted for mental health is by professional academics. And they don't have the insight or the unique perspectives of someone from a disadvantaged background, or from someone who has actually experienced mental health. So that is why it's so important for us to gain knowledge from them, to align the research with the needs of the people who actually receive it. Yeah. Thank you.
Shuranjeet: Thank you Jazz for point that brought in, you know, statistical experiential and loads of different types of insights. I really appreciate you sharing that with us all today. Did any of the other panellists, Dhriti, Rhea, want to come in on that? Dhriti?
Dhriti: I think this is something that is actually in my mind since attending the first panel discussion. Does this something there's a sentence which comes up often in mental health discussions is that we often say things like no one knows enough about mental health, or none of us are truly experts on mental health. And in a way, I don't think it's necessary for us to be, because I know they use this term about one person being the central expert and somehow knowing everything about every mental health situation and intervention that exists in the world. That's simply not possible.
A lot of times when we say that we don't know enough about mental health or we don't know mental health, the truth is that we do know something because mental health is a universal experience, that something or the other, which all of us do know, but we don't always know what value to put on it. And we don't always have resources and infrastructure around us, which allows us to put value in it to actually check this intrinsic knowledge we have in real-world context. So in a lot of ways, we are, we have a resource of mental health knowledge. We have a resource of mental health information, which completely goes to waste.
So in a way, why I think this is so important in putting innovation and funding into things like this is that, there is a lot of potential we have around this existing, which we need to put value in, and we need to put value in, in terms of funding, in terms of things being carried forward in actual ground research and things, which we can now put numbers behind and we can put resources behind. And the second thing, which is actually something which just came to my mind, listening to what Grace said about the Westernised perspective and the kind of colonial way we've come to look at mental health and leading from what we say about, we don't know enough about mental health, at our own level.
It's often, especially for non-Western cultures, whether we're in any sort of indigenous culture where even say English is not a primary language, often with mental health, we're also learning a completely new set of vocabulary when we're trying to grasp the concepts and deal with these concepts in the framework that's been laid by the traditional sort of westernised way in which we look at mental health with a top down kind of delivery. So in these cases, and for people in these local organisations, you're already at a setback, because you're also trying to learn a whole new language, a whole new framework of looking at your own world. T
he world that you already have a language and framework to look through, but you have to unlearn that, learn a new one and then try and learn the intervention and how to work with that. So I think rather than kind of stabbing ourselves in the foot, this weight which we keep having to drag with us, it's more in our own interest to kind of see what we have and work that. So that's why I think this team is extremely important. And I think it's something we really need to think more into and conceptualise more.
Shuranjeet: Thank you. Thank you so much Dhriti. And you know, just that whole importance of having on the ground research on the ground experiences, informing those broader discussions. And also, I really liked what you mentioned about almost not letting knowledge go to waste and not assuming that some knowledge is there, therefore it's all knowledge. So thank you so much for that. And Rhea, just before we go onto the next question, have you got something to share with us for this?
Rhea: Yeah, I'll keep it brief. Cause I don't have a huge amount to add to what colleagues have already said, and I think we're coming to talk about challenges which relate to this, but there is so much, we still don't know about what works for mental health, but the risk is because we don't know at that kind of global level, we think there aren't things that are working when actually there is so much that's working in certain places all over the world and we have a huge opportunity to learn more from those things. And I think there's two really core elements of why this principle is really important.
One is about making sure those things that are working can be made sustainable, because often, particularly small local projects actually ensuring they're sustainable and can continue delivering such great support to the people they are there for. And often that can be really challenging for lots of reasons.
And then I think the second part is that point about taking, learning that we can and sharing that elsewhere within countries, beyond borders all across the world and contexts is so important and there will always be differences, but that doesn't mean we can't learn from what's working in one very particular context and it might be learning about the specific services or how a project that's developed that has enabled it to be successful. There is so much that we can learn from.
Shuranjeet: Thank you, Rhea and thank you to all of our panellists for providing a broad, contextual understanding of why does this principle matter to us? So next, what we want to try and think about is what are the specific challenges that best principal is speaking to? What are the challenges that we might have come across that we might have observed, within the mental health landscape, but also beyond, that this principal is speaking to, and I'm going to pass it over first to Dhriti.
Dhriti: Sorry for the brief cluster, I turned my camera around and sort of sitting on my microphone, right? So coming back to the kind of challenges we're looking at, I think we, when we were talking earlier about the concept itself, we briefly touched upon how there are all these gaps in the framework we're using and the settings and move to applying it to, and how, what works for one demographic might not work for another demographic, how specific community-based challenges can often reach where something blanket and overall cannot.
So it's, I think this is exactly the sort of challenge we're looking at. If I give an example of something from my own country that I've often observed, is that the concept of going to a practitioner, a mental health practitioner or someone who's seen as sort of a deliverer of the intervention or the treatment, there is often a huge social hierarchy related to it. And there's a sort of power imbalance in this situation. So often for people who, and we know that like society can often be very hierarchical and, and very strident in different ways, to help people who are already at a disadvantage, hierarchically or from marginalised communities.
This set up of power becomes another challenge to overcome. And it often makes the treatment itself quite inaccessible, not just in concrete terms, but also in terms of how it affects people. Like we are already talking about mental health, but even seeking the mental health in a certain kind of setup can affect your mental health and certain aspects of how you view yourself. So in these situations sometimes, it's important for us to see how we can deliver treatment, how we can make interventions, which cut across these sorts of hierarchies, which cut across these sort of drawbacks that we face and which we know affect people and affect their mental health.
Shuranjeet: Fantastic. Thank you so much, Dhriti. I really like how you brought in the conversation there about hierarchies within experiences of care. You know, we all know that social hierarchies exist in various forms and healthcare is, also a place where these hierarchies exist and we need to name and challenge those, wherever we see them. So next, Rhea, would you like to come in on some of the challenges that we've observed?
Rhea: Yeah. Thanks Shuranjeet. So I think for what this challenge speaks to, I think the big, or one of the big challenges is just the fact that as Grace said really early on what works for supporting people will be so different for different people and in different contexts. And there is no simple, no one size fits all answer to the question of what works. And actually the questions we need to be answering, which we're very much trying to be putting at the heart of our work is around what works for few in what context, why, if we're going to find better ways to prevent mental health problems, treat them and support people to manage them in an ongoing way.
And I think with the principle of local innovation, it's not just about kind of understanding something's working, looking at one project and thinking that project exactly is going to work elsewhere, but actually looking at why that's working. What is it about that context is working? What is it about how it's developed and what then can you take from that to another context, allowing for certain differences that there, there might be.
When I first started in this team, back in October, I went to an event where we had from project called Waves for change in South Africa, which is a project that uses surf therapy to support young people who in the community where they've experienced high numbers or degrees of trauma during their life. But they have very little access to mental health support. And one of the things that came out was the fact that they don't even have a word for depression in their language, but we were talking just a little bit before the event, but actually there's no word for it.
People have understanding of it and those experiences that as communities and how they involve the young people in developing that project, having a huge impact in that community. Now that might translate to certain other communities who have like similar experiences or have some opportunities for surf therapy, but there also might be other things that we can learn from that project about how it's developed, how it's been developed with the community and what about that has made it so successful and made it work, that we can take that learning elsewhere. So I think it's about really getting a much deeper understanding of what's working and then how that can be shared where, and organisations that do work across, across countries across different boundaries, have a real role to play in helping to share that learning. And I think it's something we haven't done enough of in the past (speakers voice fades).
Shuranjeet: Awesome. Thank you so much, Rhea. And you know, just hearing from yours, being aware of the dangers of a one size fits all assumption, within these spaces and almost being open to not knowing, but then also being motivated and driven to try and understand what works and why, within different contexts. Thank you. And next we're going to go over to Grace to hear what you've got to say on this.
Grace: Yeah, I think that for me, the challenge is here really closely related to why the principal exists. I think that for a long time, there's been okay, I'll start with this. Okay. So healthcare providers across the world have had a disproportionate amount of training in what different coloured, okay. White people, when they, you know, when they detect bruises, how does a sign of this show itself. And historically people of colour do not have examples where people can detect when something is wrong. And this has led in other parts of health care to a lot of loss that could easily be identified if you know, black people or people or brown people were used as examples to measure on in training.
The same can be said for mental health care because of siloed learning, because the learning has concentrated very much on one side in demographic, there has been a loss of understanding as to what, you know, mental health presents as in different communities, what communities prioritise over the other. And so when presenting solutions it's been heavily, the solutions have been heavily reliant on how they've been tested in certain communities and not in others. And this again has led to a loss in people of colour's lives and their wellbeing. And I think that's why this is so important. When we position funding into local innovations, into local ways of thinking, into local ways of discovery, then we are saving people's lives and we are learning more and we are creating templates for healthcare providers to train with in the future, which will save lives.
An example I'll give is, you know, the friendship bench by Dixon Shawanda, by employing, you know, people of age in you know, Zimbabwe, they got to know a lot of people's challenges by talking to people they saw as grandmothers. This is not an approach that has been thought of before, because a lot of people think that going to the therapist and talking to a therapist is what will help people to open up. But we see that in communities, this is different. And, and so many other examples, but for me, that's what is important. And that's why there's so much potential here. When we do find these opportunities. When we do find these innovations, we are saying that we are trusting local people. We are trusting people in their communities to know best what works for them. And I think that is the foundation that we should build mental health on. Thank you.
Shuranjeet: Thank you so much, Grace. I really like what you said about trust there at the end, like trusting that people are aware of what works for them within particular contexts. Thank you so much. And finally, can we go over to Jazz to hear what you have to say on the challenges on this principle?
Jazz: Thank you. I'd just like to reiterate Grace's point about, you know, the differences in context and the importance of us recognising that. And, you know, I think something interesting about the friendship bench, correct me if I'm wrong, but isn't that led by grandmothers and the community who have conversations with people who need help. That is so, you know, that's in Africa that is so different to like, for example, in the UK in Nottingham, we have a charity called CGL, which means change, grow, live, and they offer mental health support and substance abuse and housing support to young people. I actually used to get help from them about two years ago. And then last year I actually did a six week training course to become a peer mentor. And the importance of that, it just demonstrates how the differences in our culture - that couldn't happen in Africa. If you know what I mean?
And also in the UK, for example, if someone has depression, if they go to therapy, they'll most likely be sat in a room alone to talk about the things that have caused them trauma. However, in places like Rwanda, the community, if someone has depression, they join together, and they dance in the sun and they do lots of activities. And rather than being quite individualistic, it's like the community is a collective and they're together. And you can see the contrast between these two communities.
And our job is to learn from both of these organisations and think about what methods they're using to help people, are they effective? Can they be changed? What can we understand? And how can we develop our own methods to help people by studying these different communities? And one of the largest challenges is our lack of access to people, because especially in deprived areas around the world, there is a lack of funding and people who actually need support, aren't given it. And that's why we are funding more groups so we can understand their perspective. And we can include those people, because they are the ones who received the support. So it would make sense for them to have a say and have a voice in what they want to be helped with and what they need. Thank you.
Shuranjeet: Fantastic. Thank you, Jazz. You know, you bring up again, the importance of lived experience and experiential knowledge, and just a quick mention to the audience. If you wanted to hear a bit more of an in-depth conversation about the position of lived experiences within the mental health landscape, you can watch the first panel discussion, which took place last week and it's available. Well, the recording will be available soon, and we'll send out that information to you.
So thank you to all four panelists for sharing your thoughts and broad thinking about this principle that we're discussing today for our next question, I'm going to ask you what are some of the small changes that we can make, audiences, audience members, large organisations can make, to move this principle from theory to action. So, you know, we're talking about positioning local innovation as a basis for learning and funding, but what is one thing that folks in our audience can do to actually start taking this principle into action? So I'm going to ask everyone for one specific thing. I know we could all go on for 10, 15 minutes on loads of stuff, but I'm going to try and get it down to one specific thing, that the audience members can do to really, take this principle from theory into action. And so first I'll go over to Rhea.
Rhea: Hi Shuranjeet, you made this question a lot more challenging by asking us all a very specific thing. I was going to say something about the fact that we, just to reiterate, we are very much on a learning curve with this, and as Wellcome, we are very much at the start of our journey about how can we best put this principle into practice. And we're asking ourselves lots of questions as a funder, about what more can we be doing to make projects sustainable, where things are working, what more could we be doing to share the learning?
And I think we are still really working through those questions and hearing from our experienced advisors, talking to our partners, et cetera. And I think my one small thing to answer your specific question would be more engagement with local projects to learn from them, to listen to their local leaders in communities and people who are part of those projects about what is working, why is it working in that context? And also what are some of the challenges? And I think the more we can have those conversations that will help us understand more about what our role could be and how we can apply it.
Shuranjeet: Fantastic. Thank you so much Rhea. Next, Jasmine, Jazz.
Jazz: Get involved by discussions and by educating themselves and trying to teach each other about this and actually think about this because it affects us all. We've just been through the global pandemic and as a collective, the human race are going through a very difficult time. And that's why it's so important that we join together and try and find ways to improve our mental health for all.
Shuranjeet: Fantastic. Thank you so much Jazz, and now I'm just going to go over to Grace.
Grace: I think individually it can be something as small as when sourcing for papers maybe in your work or when talking about something, giving local examples, as opposed to, you know, internationally well-known people. So like, you know, quoting papers that are local or quoting people that are local by bringing forward people for opportunities who are from marginalised communities or who are from communities that are not already, well-represented in the room. I think that's a good way of doing it, but also, like Jazz said, talking about it by sharing about it and also on a larger scale supporting open access publications, because they're one of the ways in which, local innovations or local papers are stifled is because there's a lot of money going into journals. So supporting open access is a good way to do it.
Shuranjeet: Brilliant. And thank you so much for bringing up that point around open access, especially, and I'm sure this is something we can all be thinking about, you know, in terms of what we access and what we use and access, but also the platforms that we publish with. Dhriti, your thoughts on something that folks in the audience can do and take forward with them.
Dhriti: I think the answers of the founders before me, sort of brought this on, but what I was thinking was that for local innovation to really sustain itself, you need a global network. And because innovation doesn't come out to the ether, it comes from a base of resources. And while we want our interventions and our solutions to be very contextualised and very relevant to where we apply it, we also want the people who are coming up with these solutions to have as wide a possible range of resources as they possibly can. So something that Grace touched upon, open access, open access to journals, open access to research is the first step in that. And I think another step, which I would like to add onto that, would be language accessibility.
Right now I'm pretty sure most of the global knowledge base is only in English and a lot of people, if I'm speaking just of my, in my country in India, there'll be a lot of people who will not speak English or will not have access to those specific journals for coming up with their own resources or things. So a lot of times, if you're really trying to go down into local communities or individual communities, especially those who have not been represented, those who are marginalised, those who have not really managed to be represented in what we're talking about, the mainstream, or at least what's available in the English speaking part of the mainstream, would greatly benefit from having this knowledge base accessible in their own language. And I think that it's actually not a very small step because it's something simple to say, but it will take many, many hours of groundwork to make this a reality. But I think it is a first and important step. If we do want to do something like this.
Shuranjeet: Fantastic, thank you so much Dhriti and, you know, expanding that conversation about accessibility to really try and make space for the folks who we've often pushed to the side. Jazz, did you want to come in as well?
Jazz: Yeah. I just wanted to emphasise the importance of Dhriti's point about how public engagement is so vital and necessary to our research and the development of it. And we need the public to inform our research, they are the people who are the ones who experience the methods and treatments as a result of it. And, their insights and ideas are so valuable and their experiences are needed so that we can learn. So, yeah. Thank you.
Shuranjeet: Fantastic. Thank you all. And you know, as we're moving into our final question, I just want to say a huge, thank you so far to, you know, for sharing your insights and knowledge, both from a kind of theoretical perspective as we started off at the beginning and then moving into practical, practical discussions and ways we can move forward. So in terms of our final question, before we go into the Q&A section. So hypothetically say, if we're in a situation where we've been following this principle, we've reflected and we've acted over a prolonged period of time to position local innovation as a basis for learning and funding, what do you hope to see change? And what could the future look like if we followed this principle? I'll just give it over to the panelists and to have a bit of a think about this question. So what is that future? What can that future look like? And I'll hand it over to Jazz first.
Jazz: Thank you. So as we travel in time towards the future, I believe that with consistent effort, we will create a world where most, or hopefully all human beings are given access to the support they need their mind, body and soul, despite their socio-economic conditions, their ethnicity or gender. I hope that as a result of these meetings, we will share and educate as many people as possible. We will develop and progress already existing practices in society like the friendship bench or CGL, and that hopefully more are created, especially in deprived areas where they don't exist, where people need them the most. And by having these conversations with the public, being able to see we're teaching people, promoting organisations and we are making changes. Hopefully in the future, everyone will get the support that they deserve.
Shuranjeet: Fantastic. Thank you so much Jazz. And next, can we go to Dhriti. What could the future look like from your perspective?
Dhriti: Both rather abstract and a slightly difficult question to answer. But one thing which I was thinking of is that currently the experience of looking for mental health help, is really going into the Google search bar and kind of searching your locality and searching where you can find what you need. And I think in an ideal future, one where we've really managed to tap into these trends, these communities, and local innovation, we wouldn't need to go to the internet and maybe we would already know somewhere in the community. Intrinsically, we could ask our neighbour and know where to find mental health help. So that's I think the idealised version of the future, which I would think if we really took this principle to that end, and it's a little unlikely, I will admit, but I think it's a good vision to keep in mind.
Shuranjeet: Awesome. Thank you, Dhriti. Yeah, I think it's you know, it's that kind of blue sky thinking what we're looking for is what potentials are there? What is there that can potentially be? Next let's go over to Rhea.
Rhea: Thanks Shuranjeet. So I think it's three things for me. One is about more sustainable and empowered local projects. So those who are doing innovative, things that are really working in the mental health field sustainable, and that they're out to share what they're doing. And there's something people mentioned that really struck me what more we can be doing to give the organisations platform and to be sharing what they are doing.
The second thing, linking to what Dhriti said, is about having better ways to share the learnings so that both people who might be running local projects can find out more about what's working and what they could potentially learn from and do in their community, but also those who are maybe needing support to find out about other things and get inspiration about actually what might help them. And I think finding better ways to share really widely and across the world, Jazz said sharing with as many people as possible, I think it's really important.
And then my third thing, which is kind of a bigger picture, and I guess partly with my company policy hat on for this, I think if we really do this principle, we'll be having a very different conversation about mental health. So when we're thinking about how we can tackle some of the challenges globally, that people all around the world are facing, and to help, we won't just be looking to big national organisations or big global organisations to try and find the answers, but those who are really making a difference at a local community level will be really embedded within those conversations, helping us to find the solutions of what works, recognising it's not a one size fits all. And I think that's a really different conversation, to how we currently approach mental health. And I think linked to that it's really important to see this principle in the context of the two others, if we're also putting people with lived experience at the heart of these conversations, and recognising that mental health is so much wider than conversation, you bring those two principles together. All of that makes for a very different conversation about mental health, than the one we have currently. And that's my hope for the future.
Shuranjeet: Fantastic. Thank you so much Rhea. And last but not least let's ask Grace's thoughts on this question.
Grace: I can definitely not say more because my colleagues have definitely put it out there. That's the vision that I want to see, but I think that just to bring this to the forefront, I think my vision is to see, yes, all of these changes put in place and programmes, supporting people who need it the most that are corruption free, because that's also important. Sometimes, you know, people get in there and sort of divert the monies to their own issues.
But also, I would like to see a bit more positive, I will say positive discrimination, but it's not really discrimination for really under-represented indigenous populations across the world. And more attention given to their mental health, more resources given to understanding and supporting them, because as it is now we're heavily failing in that space. So for me, that's the world I want to see, but I also, want to see categories coming out of local innovation, right? Because we're talking about local innovations in a monolith, but I would like to see categories as in mental health care for young LGBTQ populations, mental health care for, you know, people who are faith-based, things like that. Not only just let's fund this because it's in this country, but let's fund this because we want to capture all of those nuances and make them a priority. So that's the world I want to live in and that's the world we are working towards. Thank you.
Shuranjeet: Fantastic. Thank you all for collectively creating a very, very exciting, and I feel like, radical view of what the future can look like if we can really centre this principle. So that brings an end to the kind of open question section of our panel discussion. And I just want to say a huge thank you to everyone in the chat for sharing their thoughts, their comments, and also their questions. So there's one question that has been upvoted and it's going to be shared now, and this is open to all panelists. So the question is, what are some of the outcomes that you've seen from some of the groups that you're running or the groups that you're a part of and what are the changes that you're starting to see? So really thinking about some of the examples that we talked about, when we were thinking about this principle positioning local innovation as a basis for learning and funding. So is there anyone in the panel who'd like to go first? Jazz.
Jazz: Thank you. A really good idea that just sprung into my mind was, so MH2K is a project, but also there's a young leaders project, which is similar to it. And recently we released a loneliness campaign. So before we had an online discussion, we brainstormed some ideas and then an artist transformed those ideas into art and made a series of posters and videos. And we've shared that all over social media. And as a result, I've seen that more followers have started discussing loneliness and also in-person people have started opening up about it, and there's less of a stigma attached to being lonely. And especially during this time, during the pandemic it's so essential. So as a result of our small collaboration, we've positively impacted a large majority of people, which is amazing. Thank you.
Shuranjeet: Awesome. Thank you so much, Jazz, do any of the other panelists want to come in on that. So thinking about what are some of the outcomes that we've seen from groups that we might be a part of and what are the changes that are possibly linked in with that?
Grace: I'll go next. I think that a really simple one that I think everyone here kind of does do, has been a growing, growing willingness of organisations to pay people with lived experience. And that I cannot say that it's led by one particular group or the other, it's been a concerted effort of people's lived experience pushing and a big part of it also has been funders like Wellcome getting behind it and saying, yes, you have to pay people with lived experience. And so that's a change that I've seen and I hope to see trending more.
Shuranjeet: Fantastic. Thank you, Grace. And yeah, I think that the whole thing around acting rather than just saying is huge within this area. Rhea, was that a hand up? It wasn't no worries. So the next question that we had coming up was could any of the panel talk about a specific project that they're working on to help this audience member, to grasp the work of a lived experience advisor? So ideally one of the lived experience advisors, but it would also be great to hear from Rhea in terms of, how you've interacted with advisors. Does anyone want to come in on that question? Potentially talking about some of the projects that you're involved in? Jazz?
Jazz: Yeah. So as I've mentioned, MH:2K, that is for people who have experienced mental health and who are interested in it. I'm sorry. Could you repeat the question again? Sorry.
Shuranjeet: Sure. thing. So the question was, could any of the panel talk about a specific project that they're working on to help this audience member, to grasp or understand the work of a lived experience advisor? So as a lived experience advisor, what does your role involve?
Jazz: Right. So my role is by using my experience from the past and the expertise that I have gained from it, using that knowledge to help other people and to join in projects, basically, that's what it is, using the suffering and trauma, sometimes that we've been through to actually create positive change and to provide a unique perspective that someone who is a professional academic, may not have. And this is why the last meeting was about putting lived experience at the heart of policy and practice by making sure the people who have real experience who have actually had mental health issues or been affected by it, have a say in what we're doing. Thank you.
Shuranjeet: No worries. Thank you so much Jazz. And I think Rhea wants to come in as well.
Rhea: Yeah, thanks Shuranjeet. I'll keep it brief as I'm conscious of time and there are loads of good questions in the chat. One of the things that I can do quite a bit of work on with the team is around work place mental health and trying to understand what evidence for what works in different contexts and our lived experience advisors has been really helpful working with us to think through some of the questions that we're trying to answer in that research and thinking through what are some of the differences in workplace context that we need to be thinking about when we're setting up our research proposal, to make sure that the research we're funding is as relevant as possible.
And we are also asking all research teams as part of that research to involve people with lived experience in the research that they're doing for the commission. So we've been working with some of our advisors to think about if different teams are doing that, what does good look like, what should they avoid? And they helped us put together part of that request for proposals they're involved in it really tangible ways in the work that we are doing. Those are just a couple, there are lots more examples and I know Dhriti could share some. I'll leave it at that, but there are lots of examples.
Shuranjeet: Fantastic. Thank you so much and Dhriti, did you want to come in there?
Dhriti: Yeah, I was actually wondering whether we were allowed to talk about the work we do confidentiality wise, but, what Rhea said is a very, sometimes a very tangible role as well. So for example, when we are reviewing proposals as a lived experience advisor, like research proposals, often we're looking at what has been proposed not just in terms of, as a person reviewing research methodology, but also as a person who's aware of how interventions are carried out in our own context, and in multiple contexts, whether we've worked with a non-governmental organisation in our own country, whether we worked in a corporate organisation, which does mental health delivery.
And we think about how and, we also think about our own experience of someone receiving these interventions or doing various things to help manage our mental health. And we try and contextualize, really put it into the real world sense of what would work and not work. And sometimes the obvious conclusion is something which before I became familiar with the whole concept of lived experience, because there's always a time when you're looking at it with a researcher hat and not with a lived experience hat, you assume that if you have enough perception as a researcher, if you have enough perspective, and if you're someone who reads up enough, you will know enough and you won't need someone with lived experience to tell you, which is really the thing is often even if, no matter how much an expert you are in this field, you'll see there are differences in what you will say as a researcher. And the same person will say, thinking of yourself from the other side.
It's a shift in perspective, which is just humanly difficult for yourself to do, if you don't bring in an expert. And in this case, the expert is the person who's going to be using these interventions that you're putting all these efforts and all this research and all this funding into developing. So it's really necessary for you to look at it from the user interface. You can build a website, but if the interface isn't good, it's not going to get used. So it's a very simple analogy putting it that way, but that's basically why we need to put this at the heart of research. And this is what a lived experience advisor basically does.
Shuranjeet: Fantastic. Thank you so much Dhriti. And I think that takes us to a fantastic close to this discussion today. So unfortunately we are out of time. And so I want to thank the speakers for our fantastic discussion today and to the audience for all of your comments and your questions. So I hope we've had some time to reflect on some theoretical and practical implications for positioning local innovation as a focus for learning and funding.
As mentioned, we're all sharing, listening, and most importantly, learning on this journey, which will be continuing as we move through the mental health landscape and beyond. This is the first time we've run public events. So we really, really do appreciate your feedback. So there's a link to one of the evaluation surveys in the chat. And please also do send an email if you'd prefer to give your feedback through that mechanism as well. So I just want to say an absolutely huge thank you again for coming and sharing the space with us. And we hope to see you all at the final panel discussion series on the 14th of June. Thank you.
- Chair: Shuranjeet Singh, Lived Experience Consultant, Mental Health, Wellcome
- Dhriti Sakar, Lived Experience Advisor, Mental Health, Wellcome
- Grace Gatera, Lived Experience Consultant, Mental Health, Wellcome
- Jazmine Jane Hutchison, Lived Experience Advisor, Mental Health, Wellcome
- Rhea Newman, Policy and Advocacy Adviser, Mental Health, Wellcome