Theo describes his experience of coproducing in various public health contexts

sure. Thank you. Bye. Introductions

I I work in three different roles in the public health sector, Uh, one for public health education. Working for a a global community based charity. Uh, secondly, I work at a much more local level

Um, for a Somali led charity, Um, that's focused on reducing health inequities and inequalities in the Bristol area, in particular, in the city of Bristol. Um, and thirdly, I work for the university in the city, uh, working in, uh, the Medical Research Council integrative epidemiology department, where I I support with impact and engagement and supporting, uh, different areas of co-production from that point. Um, so I guess an example of, of of coproduction

I think the definition is ambiguous. Um, but that's to our advantage to some extent, because it means that we can be created with it. I think key for us

Um, when I say us working with with the the first of those charities Global charity, I think it it's just that it's genuine co-production so that people have a voice have input. Um, they are not only listened to, but they are heard that is, that they can see the output of what they say is listened to and the outcome is that actually it's integrated into the programme. So an example of that is, um, working on a maternal health project that's based in Cameroon

Um, we work directly with a local charity and very keen to foster local ownership. Um, so it's in the southwest of the country working maternal mortality, and we've taken a very kind of, um, ground up approach to the project, Um, taking advantage of the fact that we've got a global team. We've got expertise often trained at some of the public health schools in London and around the globe, based everywhere, from from Singapore to to Bermuda to Peru, um and, um, London as well

And bringing that team to work collectively to work locally and why it sets a good example of co-production is because we're working directly with the local organisation, the will foundation, and even at the first phase of the project, we focus very much on social listening or community listening. So we devised a qualitative survey that's quite in depth. Um, it does have a few questions that you could generate quantitative data from, but in effect, what we're really trying to do is understand

First, what do the mothers need to know? In rural parts of Cameroon, where there is an ongoing conflict, the Anglophone crisis and thus the health clinics have closed down. So a lot of the health services have have have have fallen to traditional birth attendants. So first, what the mothers need then what do the closest to the mothers need, such as the birth attendants need to know and then working your way up through the health system? So afterwards, what do the nurses the midwives need to know? And then afterwards, what's the link between that and the health system? But really, the point why I make it is that I I suppose it's It's that local ownership working, um, in the sense of kind of a bidirectional innovation between ourselves and the foundation, where we've developed the project collaboratively from the start

But now, even when working in the field, it's really important to us that it starts with the community and understanding what the mother's needs are and what they need to know, as opposed to presuming or assuming uh, a system, um, or an intervention, uh, it's developed from the ground up in that sense. Um, yeah, thanks. The what's what's the impact of that in terms of the people and the organisations involved, Um, and the difference that it makes, um the impact that it has on the organisations

I think it gives everybody a sense that they are engaged and involved with those who understand the context. Um, and in public health, it is so much to do with the context and being appreciative maybe from a kind of anthropological perspective being appreciative that, uh, we have different cultures, we have different needs and we see things differently. And we we shouldn't presume, uh, a kind of ownership of knowledge in terms of what works

So I think that point is that openness is really key. I think that's what makes a difference in this project in the sense that we're all being open in the sense that we're going in with not knowing what will work and developing a project based on what the community identified as the challenges and the barriers to change around them, with the hope of designing a project and co producing a project with the foundation and later with local government networks to ensure that it has the buy in at a higher level. But really, what's integral for us is that it has the buy in at a local level, and then that's the difference

It's the community empowerment, community involvement and community engagement from the off. And And I know you. You talked when we were chatting earlier about the examples of of doing co-production, you know, in in in the UK, obviously one with a smaller community

But, you know, the the other one in a kind of health, um, research setting. Um, is there a difference? Do you think between that experience and your experience of coproduction, um, or is it? Is it quite similar? I think it's quite different, Um, in my own experience in, in, in, in the university setting, it's It's It's the priorities are quite there are, um, the the priorities are different. I mean, every everybody's trying to improve population health

Um, but, um, the methods to which we do that are different. Um, so thus, internally, there's different priorities. So, for instance, in the for for the University of Bristol, I work in in, uh, an area of epidemiology

That's that's to do with genetics. Um, and it's driven a lot by statistical analysis, and therefore co-production is not necessarily a natural fit for stats. However, if we look at the challenge at a very high level, um and you say, Well, there's huge inequalities in terms of the diversity of genetic data available, say, for instance, um, at present, 95% of global genetic data is based on those from European descent and participants

Um, in fact, I think it's a slightly higher If you take dissent. It's up to 97%. So thus we Thus, we're developing our prescription medicines or interventions based on, um, European genetic dispositions, um, and and that makeup

So why it's so important that we integrate co-production is is that we need to buy in from the community. You need to build trust somewhere along, so that's the highest level challenge. Um, and what we want to do is include more representative samples and so to include kind of more representative samples, I suppose from a university perspective, you could say the approach within this area

This is kind of a fourfold approach. You could say there's a knowledge argument. I e

that you you want people with lived experience of a disease, whether it be Parkinson's disease and you're working around that or whether it even be lived experience from smokers, um, or alcohol, uh, consumption. You it. It's interesting for the researchers to hear that lived experience

There's a moral argument that the the taxpaying public should really be involved when it's funded from from the Medical Research Council. Went through that their their their work. And And I suppose, is the policy imperative where you really want to evidence that patient and public involvement is is actually a part of the process

And actually that aligns with many of the funding policy direction that things are headed in. Uh, the the the P. P I public and patient involvement is is central and and I suppose there's a consequentialist argument

There's a later point where you just need to have transparency and accountability in the process to the wider communities. So it's not designing health interventions for communities or to improve health. But it's by and with them

Um, and I suppose that's that's the aspect which we try and cultivate. It's it's not straightforward because it's not the way that it's been done conventionally. But it's definitely aspired to do that way to engage other underrepresented groups and and to really hopefully engage more genuine co-production from the offset so that we can design better questions that meet community needs

If that makes sense, Yeah, it does. I'm just wondering if you've got, um, you know, a a specific example or something you know, around the impact of of working with communities in that way in in relation to that through the university. Yeah, So I guess Say, for instance, a recent recent recently year, um, a younger researcher came to to to ask about how to, um, look at vaping

Uh, still looking at the what? What are the impacts of vaping? Is it Does it have a negative health or or positive health impact? Well, at the moment, the data seems to suggest that it it doesn't have a negative health impact. That's of high concern. At least thus far we don't know that um, and the researcher also wanted to kind of understand from an empathetic perspective, how do smokers ex-smoker or non-smoker think about this? Uh, as an alternative

And thus, how do your potential markets for vaping. Consider the role of vaping in the community. So you work with the community in terms of discovering you could use kind of design thinking methodologies like affinity mapping the process, asking people to generate the questions and asking them to provide the insights that will enable the researcher to think more broadly

And I think that's the key. Is there is it It helped the researcher from this perspective to redesign a question, uh, to consider that, And and I think another probably a better example is, um, on a mental health related project. A lot of what is done in, in, in in this particular area of epidemiology is under which were trying to make more participatory epidemiology

But what was done was, um, mental health intervention. A lot of it's focused from a genetics point. Um, how do you deal with it? From a preventative point? I How do you prevent, uh, challenges in mental health arising? Um, but when asking the community, what the researchers found is actually the community are more interested in learning how to deal with mental health, and thus it shapes how researchers are thinking about the question at quite a fundamental level in terms of Is it responsive, or is it preventative? Um, which, which I think is hugely important

And it enriches the research as well through that that process of engagement and the earlier that that happens at a participator rate to point or whether you're involving the community all the way along the line and having a a kind of a board where you can copro produce policy, um, copro produce how it's communicated is is is really helpful, uh, from the Officer. But that's a really interesting, um, example, isn't it? And I don't think I'd even thought about it quite in that context, we talk a lot about prevention, but actually that that is a that's almost redefining what the what? We think the problem is in the first place and if prevention is gonna solve the problem, But until you actually involve people in that process, you don't know that. Actually, there's a lot of stuff that probably can't be prevented

But how we how we work with people to support them on their journey through mental ill health? Um, it is probably, Yeah, that that's yeah, send send me off on all sorts of things in my mind that that whole redefining, um is we? We missed that. Do you think? Do you think then, in that context, there's a lot of moments like that where people just stop and and rethink what it is they're trying to solve in the first place. Yeah, and I wouldn't say that's exclusive to that contest

I think that's part of Co-production is, is, um, for me, at least, I think it's It's it's it's it's giving people the opportunity to speak. Um, and it's facilitating it. I think it's it

It's it's It's helpful sometimes to have an intervention approach to interviewing I probing to help people through and facilitating that process so that they both benefit from from the results. But I think having those sort of questions as I mentioned earlier, having those questions listened to once people have spoken and heard is the key part and heard is the difficult part in a sense, because I think we ourselves, as human beings are always trying to hear, Um, but we don't necessarily know that the person on the other side of the table has heard what we intended to be received. Um, and thus I think co-production is an opportunity to start to bring people from the margins

Let's say in research or bring policymakers who are on the margins when it comes to grassroots, uh, collaborative work or or bringing us from the margins when it's working in that maternal health project. Because we sit outside the context bringing us in to understand what's needed within the context that people are living in and how they identify with it, Um, and and sharing expertise to also generate new kind of, um, I suppose Segways to knowledge, uh, new paths to knowledge. Um, as as as I think that's what Co-production allows allows us to kind of rethink, reevaluate

Consider what is available and what we can do. Uh, but also how people are defining the challenges. Because sometimes it's not always what we presume as as you started with Yeah, yeah, so So there is that kind of iterative nature of it

And there is the kind of you use the word facilitation, um, as suppose to a kind of training or or the form of development approach. So maybe a different skill set within that for people um, as well. Yeah

How How does that How does that differ, then? From the from the third example. Then you know, is that Is that different again? Um, or are there some similarities in terms of, for example, being so sorry? The, um the, uh, Somali charity working with the primary care networks. I think you said, Yeah, I I think I think on both sides are probably an element of something else which we could do potentially through

Co-production is unlearning things as well. Um, that is challenging or kind of assumptions. The implicit assumptions about what works, what doesn't work? Um, some of it is so difficult to quantify

I think that's one of the most difficult things. So, for instance, um a, um discussion circle may work within the community Well, but trying to quantify the impact of discussion circle is not straightforward. It could be done

You could ask pre surveys. You could ask post surveys, makes it almost into a clinical work workshop before and after. But it we we struggle to otherwise measure it

But I think that's one of the things is is kind of, um, learning from the communities that actually their knowledge, resources and skills work. Um, and they have worked and they are tried and tested. They're kind of customary, and you could say threat and tested over generations

And I think that one to always have evidence to back up a intervention can sometimes hinder the freedom or the innovation that is naturally occurring or naturally emerging from their way of doing it. Or their approach, which is gone on a human level. Visibly high levels of impact

Um, and you could say on a qualitative level on the feedback forms really excellent impact. So I think that's that's one thing. And I think from our perspective, it's it's kind of learning

Well, how does that fit within a method that we can measure it to the primary care network and then also considering what do the GPS need to potentially learn and unlearn? Um, if there is inequity at every point in the cancer pathway, there is an inequality, or there is a delay comparable between, uh, the Caucasian community, the Asian community and the black community. If they all have different treatments, but they've also all got different needs then, then that approach needs to be nuanced. And I think this is where co-production is kind of bringing voices from, um that aren't necessarily heard or aren't visible to the surface, um, or can do

Um and that does require a certain amount of of unlearning in the sense of of I think policy is quite prescribed and top down. Um, and I I'm hopeful that coproduction has kind of methodology, and an an approach is is more widely used so that communities are more empowered to to to shape those narratives as opposed to just being spoken to if you're also spoken for and the voices are spoken by them as well. Yeah, and And that and that pull of feeling like you have to evidence something in a way that suits the system rather than evidence things in a way that actually really means something to people, um, is is hard

Yeah, but stuck in a paradox, though we are, we are stuck in a paradox. I think I've had some interesting conversations with people, and and, um, there was one chap who talked about his experience of using data, actually to inform who he had in the who he had in the room really, really effectively. I couldn't remember the detail of it

Now I'd have to go back and, um and and relisten. But I do. I do wonder sometimes whether with the with the coproduction kind of in that bit of what we're trying to achieve, whether we're trying whether we're trying to create, um not that we are really something

That evidence is how it works when, actually is it. If co-production works, then the impact is on the data that's already in existence. And how do we build the relationship between the two? Does that make any sense at all? So, yeah, I mean, could I could I ask you to rephrase? I I'm trying to think it through because it's a difficult question, but I think it's an important one to ask

Yeah, so So I think, for example, you know, to use a mental health example we often talk about or, you know, how do we How do we quantify how we're co producing with people when actually, if we copro produce well with people, the knock on impact is that less people go and see their GP less people get referred into secondary care. More people come out hospital and are better supported in terms of the experience they have in their own community. So are we may be trying to realise the value in the the wrong or look for the value in the in the wrong places

I don't know. I just kind of thinking aloud, really. But I think it's a conundrum

If honest, I think it's difficult to quantify. And it's, um I think we spoke about, I think, um, the idea of that that Max Weber came out with a century or so ago with regards to the fact that we're in an iron cage or the the kind of, um, bureaucratic system, you can only change the system within the bureaucracy. You can't change the system outside the bureaucracy because the bureaucracy is all encompassing and all pervasive

It's everywhere. Um, and I think we're also kind of like we're stuck in a cage of words as well. I mean, we're we're kind of doing that and then bringing it al also to a level

We're kind of stuck within a cage of of how to quantify things with the health sector. It's difficult because in the sense you're kind of dealing with the alternative, which is quantifiable data, which is straightforward, that is, how many malaria nets do you distribute within a region? Um, what is the uptake of the use of those malaria nets? What is the result? I did the number of those being infected with malaria go down or did it go up? So that's kind of a vertical health intervention. I think, on the horizontal side where co-production is is a key element

So that's not where you're dealing with health interventions that could be pharmacological, like the COVID-19 vaccine or but rather, um to do with things like social distancing. And And how do you quantify whether social distancing has actually impacted? Uh, the disease spread or not? It's really difficult unless you put it in a laboratory environment. But the human world is not a laboratory environment, Um, and it's not always straightforward, and so it even becomes even more difficult when you're dealing with things like public health education or our youth training programme

It's it's really difficult to quantify it because the whole idea is that they themselves develop their own projects. So the output is them actually working coherently together and developing something, um in. And, um, I think that's That's true of a lot of areas of public health

It's difficult to quantify. It's difficult to quantify the the the challenge that living in in in densely packed housing environments increases the spread or transmit ability of a disease or exposes you. It's difficult to quantify

We know these things. It's difficult to quantify that if you're in a if if one out of seven families in the UK has a food, uh, crisis, in fact, that they've got a food insecurity problem, which is the current situation. We know there are a lot of elements that will be impacted by that childhood obesity, because the pricing of of high calorific food is, is is there we know that that the obesity, um, is is prevalent within more deprived areas

This is going to exacerbate these challenges. So this is This is where I think this co-production becomes a part of listening, and I think it's a kind of lesson. Uh, if you like or transferable way of thinking about how we really do need to start to to to to engage more in community, lessening community involvement

Um and it is difficult to to quantify that, uh, and it's difficult to quantify the value of that because what we see is the data on it. We see the data on the population. We map, we put a G i s map together and we we say that there's high density housing in this area and this has got a high crime rate, and there's so many other causes and factors to be considered

My view is that I think these community sharing circles, discussion groups, co-production sometimes when it's off the record or out of the, um the more prescribed way of doing things is is how we uncover more about what the system is doing and how the system interacts itself. What are the different points? What are the effects that it's happening? It's negative and positive, according to the community. Yeah, no, that's that not

It's really interesting that there's there's definitely a value there, but But quite what? That quite how you evidence that is, um, is is is the challenge. Um, so, yeah, and there there is a value in it. I just I don't know how else to um to to say that whether I could evidence it or not

I just know that that's I just know that that's true in my experience. But, um, that is a challenge. What? What would you say? Um, so I did have another question in my mind, but it's kind of wandered off somewhere

Um, no, it's gone. I think. I think it's a challenge partially because we're we're so dependent on, um, having readily available data when it comes to economic impacts, and you look at where the markets work

Food pricing is a really good example. Here, for instance, you have a conflict going on. That conflict may be a cascading crisis from the environmental challenges, which we're facing kind of as a blow, that it affects us both on a macro and micro level

It's affecting our food, pricing, our fuel pricing in the UK as well as in yeah, everywhere else in the world. Um so I think I think that's where we see immediate impact. We see the kind of ricochet effect and when it comes to to to to to health interventions and kind of quantify the value of provided community hubs and so forth

It's dependent on us ourselves kind of validating that in the first instance, saying it works or not, it's more difficult to quantify the effect that it has downstream. So what's what's what impact does that have on us on an individual level? Does it build our confidence? Does it take us on a different path? Um, does it help us with the smoking cessation, for instance, attending a health clinic being listened to? Um, that's something you could quantify, but you can't quantify how that ripple occurs necessarily, and it's often that it happens over time. I suppose, uh, we see the effects of our educational policies, our housing policies over time to Michael Mama, who was mentioning yesterday that, um, it's in his view, all this austerity and so forth left us incredibly underprepared for the pandemic

Which is why England and Wales, um, were some of the worst performing countries in the European continent because of of of this kind of, um, repeated under investments in in policy, but also that that results in the fact that communities are less well equipped or have less access to um aspects which which complement public health, the housing education no and access to to to to to kind of health champion networks or to charity organisations and play their role. Yeah, who play their role? No, no, it's It's really interesting. It's It's the access

It's It's not even the access, is it? It it for? For a lot of people it is. But for some people, it is, actually, how can they be actively involved in the conversation? How are they being listened to? How are their views taken on board in that, um, and and I And that's some of what you've described, um, in in the examples that you've you've used, there is a value in that, um, but it's Yeah, the challenge is the, um, evidencing that. And maybe it's just talking about it more in in some way, actually

I mean, this is how social media defines a trend, right? It generates a hashtag which, which takes, uh, uh, the world by storm, so to speak. And, uh and yeah, we see the effects. Yeah, it's it's having that conversation

It's important point. Yeah. No, thank you

Is there anything else you'd like to, um add in terms of your experiences? No, I think I think it's I think, um, more just on a general point. I think it's just an important thing to continue engaging and discovering itself, like, how does does it get defined? I think it's, um it does help to have, hey, language for coproduction because I think that provides clarity for stakeholders interested in working in it. Think the most difficult bridge, which I've tried to cross numerous times in terms of coproduction that I found more difficult is, is the corporate engaging corporate organisations in it

There seems to be a willingness, but there is also, um, a challenge, the the mutual benefit that they wish to see. So this is me speaking slightly controversially, but the the the the A corporate one in the charity sector often wants to see well, what do they gain from the relationship? And I think this is a bit backwards. I think it should be more

What did the community gain and education will be centred. I'm I'm not a great fan of, um, volunteer tourism and things like this, where where I think it's something we have to really examine as to whether that's actually helping the community, um, flying in people from a corporation to see what they funded and to walk around that community. It's it's not, is that in the community's interests, it's a big question

We need to ask, Um and, um, I think possibly a lot of, of, of of how we think about it from a charity perspective and co-production is, is that the money does exist and it's greatly appreciated. But at that same time, the work doesn't happen without the charity. Hm

And this is the point. This is, and and and the communities don't become healthier or better or more confident and more capable or gain access, um, without them being validated in that process. And I think charities are good at validating the role of communities, possibly less good at quantifying that something they strive to do

And I think that that's where that is probably the bridge where I do think there's probably huge amount of potential is working with corporations or consultancies to try and quantify that you've mentioned it before. How do you measure that impact? Well, some of the most intelligent minds work for these large companies, and I'm sure they can help crack that. No, but it's gonna entail co-production it? It has to be a co-production that neglected

It can't be. We think this will work because it's not what they assume. And you're dealing with drug dependency, necessarily, it's or or cancel inequalities

It's These are complex issues that require a listening and hearing approach that coproduction can offer. Mhm, hm?.

This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.