Forebyggelseslaboratoriet har inviteret Jemma Hawkins til at kaste et kritisk blik på samskabelse i komplekse interventioner.
Læs invitationen til forelæsningen på https://www.regionh.dk/forebyggelseslaboratoriet/nyheder/Sider/Invitation-til-%E2%80%99Samskabelse-i-komplekse-interventioner-%E2%80%93-et-kritisk-blik%E2%80%99.-Forel%C3%A6sning-af-Jemma-Hawkins.aspx
Jemma Hawkins er seniorlektor ved Cardiff School of Social Sciences i Center for Udvikling, Evaluering, Kompleksitet og Implementering i Forbedring af Folkesundhed.
Læs mere om Jemma Hawkins på https://profiles.cardiff.ac.uk/staff/hawkinsj10
Jemmas forskning fokuserer på metoder til udvikling og evaluering af komplekse sundhedsinterventioner, herunder metoder til procesevaluering og samskabelse (samarbejde, co-production, co-creation, co-design).
Thank you so much for inviting me here today um to talk about something that I am extremely interested in um it’s been fantastic to learn um earlier today about some of the work of the center and the overlaps in our interests and I’m hoping for some really interesting
Discussions um after I talk a little bit about this sort critical look at co- approaches um so what I intend to talk about is I’ll start a little little bit just thinking about well what our co- approach is I think probably a lot of us
Know about that but just to to sort of give us a good um basis on which to to have this critical look think a little bit about well why why are we even talking about these things why are they important why should we be thinking about them oh and
Then also some reflection on the challenges um so this sort of thinking critically about co- approaches what what things do we need to consider where might we have some challenges in making this happen and what might be um potential limitations to the approaches as well so beginning with what are co-
Approaches as um Anna was saying um co- production co-design co-creation is what I’m going to focus on um but they’re not the only terms used and I think we have um some difficulties sometimes in identifying what are we really talking about when we talk about co-production co-creation co-design there are overlaps
Between some definitions that we see about these terms and there are they’re sometimes used interchangeably and there’s a link with approaches um with regards participatory research um some people talk about how participatory research is sort of an approach to research and co-production co-design co-creation and methods that we use that
Are participatory in nature and I also put citizen science on the screen there because um when we’re thinking about co- approaches within research sometimes we’re interested in a really collaborative approach where researchers aren’t the only person aren’t the only people doing research so thinking about citizen science that’s an approach that
Very much um encourages and uses uh the public as researchers as scientists so I wanted to put that there as another kind of consideration for us as well and then I also thought it would be helpful to think about the very many terms that we have when we think about
Who we’re working with in these co- approaches so ourselves as researchers but who else is part of that uh process who’s part of the that approach um so stakeholder is quite often a term used thinking about people who have a stake in our research um perhaps the people who
Our research is for if we’re thinking you know we have a health Focus here we’re trying to bring about changes to People’s Health we might be focused on a particular health problem um so people who have a stake in that health problem which might be um the population who um
Who are trying to change the health problem in or improve health for um sometimes we he hear the term service user H so people who are using users of the services uh the health services for example that we may be working with but also if we’re designing interventions to
Improve health then may be the people who would be the users or recipients of those interventions we also have practitioners here so thinking about um people who may be involved in supporting um uh the target population or the service user through through their practice again to improve health whether that’s working in Health
Services whether that’s um working in community um Services um but with that focus on doing something in their job that’s linked to um our research the things that we’re trying to change in health so we’ve got the public and citizens more generally over there this might not always just be members of the
Public who are the target population but could also be the general public more broadly so people we may be interested in bringing about change uh for people with type 2 diabetes but we might also want a wider public um input or perception beyond that population and in citizen science that’s
Very much the focus of General um citizens populations and I’ve put co-researcher at the bottom there this idea of again people who aren’t researchers in their day jobs but potentially becoming involved involved in research through these co- approaches that’s a term that we see used sometimes as part of Citizen
Science but more broadly as well in our co- approaches and finally expert by experience and this starts to move into this discussion about well why are we doing co- approaches the one of the main reasons is to bring particular experience whether that’s of the health problem um
Of the target population of the context and setting that we’re working with as researchers we may not always have that particular um experience and expert knowledge and we’re looking for people who are experts in the lived experience of a health problem or of working in the communities uh that we’re were our
Research is happening in um so thinking about um the people that have the expertise that can be brought into um a a co- approach and I think it was mentioned in the advertisement for this talk about you know there’s much there’s a growing interest and emphasis in these co-
Approaches and I was interested in just having a look at well um what does that look like in the literature in the research literature I like to do a literature review um I am a researcher after all um so first of all I went to web of science which is not an
Exhaustive um database but it has captures quite a lot of of health research in particular and I searched for co-production co-design or co-creation um fairly broadly so in abstracts in keywords in titles oh oh no you can’t see the graph I think it’s just very very pale oh
That’s a shame um is there that’s so essentially what you can see what you would hopefully see on this screen is um that’s really strange it’s supposed to be there okay essentially we’ve seen a massive increase where with if we look back to the early 2000s it was like here like a
Hundred or so papers and it has uh very steeply increased uh in recent years um so 2002 is what I’ve highlighted because 2003 2023 isn’t um over yet and may still increase um so in 2022 there were over 5,000 papers that included these words in either their title abstract
Keywords um so not necessarily writing about how to do co- approaches but talking about using them in their research uh we Ed the co-production approach we did this co-creation if we do focus it in on people who’ve put this in their title then there are fewer but there is
There’s still a lot there um and um again with a very similar um increase uh exponentially sort of since um since the 2000 um and I’m going to talk about a few very current papers um over the next few slides but I will give a caveat that I’ve not read all of these
Um so I might miss things and I’m interested in hearing from people in our discussion um about you know interesting things that you’ve seen and ideas and approaches I shouldn’t have touched that um so let’s think of a couple of definitions and I’m starting with co-production
Because in the UK um I think we have a slight um prominence of this term potentially or at least historically we have so particularly in health research but also Health Service design and Health Service uh quality improvement co-production has become really popular um and that tends to be the term that we
See used uh it’s got quite a long history so um it doesn’t come from Health uh research or Health Services it comes more from Urban governance for example in the USA in the’ 70s um but this is a um a quote on the screen here that talks about it specifically with
Regards health services so this idea about it being more than consultation um and talking about people who have particular skills and experiences to to support improving Health Services uh and doing that with a shared responsibility um so not just um being something that professionals do but there’s a shared
Responsibility of of other people particularly thinking about um patients here I’ve got a couple of other um quotes there thinking about um involvement of service uses is the term they use here um not just in design but also management delivery and evaluation of services um and more particularly
Which are of consequence to them so this idea of of that having a stake um in the service this idea that should we really be producing Services producing interventions doing research to people and about people or should we be doing it with them um and I’ve put I’ll come back to
This in a minute but this idea that we talk about service users I mentioned earlier practitioners this idea of people who may deliver services or if we’re developing interventions maybe the people implementing those interventions um but also people who fund them as well and I was just going to touch on um
The broader field of public involvement stakeholder involvement of which again there’s lots of literature um and guidance about um but this idea of when we’re doing co- approaches we’re really looking across to these sort of far ends of these continuums where we’re not ask we’re not always we’re not purely
Consulting with people or asking for information but we’re working collaboratively in an empowered way um so a couple of different sources of those sorts of models and ideas of of doing things at this end of the spectrum or at the top of that ladder I I don’t entirely know why co-production is above
Co-design on that ladder um there’s not a definition that goes with it but that sort of it’s putting them above um engagement consultation so it’s like a Step Beyond doing something collaboratively if we think about co-design and co-creation again as I said earlier I think we’re at a point in the literature
Where and uh in practice where there is still interchangeable use of some of these terms and perhaps less agreement on what they mean and whether they’re the same thing or whether they’re different this is a perspective put forward by Vargas and colleagues last year that sees co-creation as an
Umbrella term in which co-design and co-production are sort of encompassed and one of the things they talk about is this idea of a timeline of the work we’re doing whether we’re looking to improve a service or address a health problem or or whatever that is we have
Sort of a period of sort of needs assessment or problem definition and understanding that requires um identification and Analysis and definition and then we might have like we may be designing something a solution to that problem l oh is it a a screen saver yes sorry I’ll carry on I remember
What it says um so at the other end of that timeline is then putting things into practice after we’ve designed them um implementing uh or realizing as it says here and then evaluating and um they see codesign as being this first initial stage of a co- approach and co-production being something that
Happens um when something’s already been designed so there their sort of separation of co-production in in this model is the idea that um uh co-production is something that we do when we already have something specified so there’s less room for making shared decisions um and so that that was a
Little bit strange for me because as I said in the UK um we use co-production probably the most at the moment or have historically and I was thinking well co-production some of these things for me are co-production maybe that’s my understanding and my definition of co-production um they’re not I wouldn’t
Say that we only respect and value knowledge but we have a more broad understanding of respecting co-production so I think I really I was really interested to see this and starting to think about well maybe what do these different things mean and this is based on you know what we’ve seen the
Ways in which we’ve seen co-production and co-creation in these terms used um I think in reality we’re not there yet with a pure agreement on what everything is and lots of still interchangeable youth but I I feel like maybe we’re moving somewhere in trying to figure
That out um and I’d be interested in people’s thoughts on that later as well so I said um this idea of co-production and the same with co-creation and co-design they’re not necessarily new ideas they’re especially not new ideas outside of health and another thing that we’ve been quite
Interested in is is where these kind of approaches are used um in other fields in other disciplines um and in practice and particularly looking to manufacturing and product design where of course if you want to develop something for consumers to purchase you want it to be the most relevant useful
Thing so that they will buy it um and so that it works for them um so there’s a lot of um what’s calls sort of user Le or user involved um design and research so a couple of examples there’s something uh from in the 70s called software life cycle development that has
This focus on well you really need to understand the needs of the user or of the system that the the product or the software would go into um but also that you would have what’s essentially a process of feasibility testing you have this phases of testing out and debugging
Um potential problems with it when we’re first testing something out um and that’s similar to um usability engineering as well and more recently I’ve become familiar with design engineering which I think is similar this idea that the more effort we put in at the beginning um the less cost we’ll
Have at the end and this idea of again really understanding the the user and they talk about the setting here where the product will be used how it will be used but then in involving those users in the development of the software so helping testing out and feeding in uh their
Opinions and their feedback and then um a continuous um and nonlinear so more like a cyclical approach to quality improvement um to very rapidly assess um the viability and improve the product and there’s an overlap um with um approaches such as design thinking as well which have also been used in
Product design but are being used within Health Service design as well and again there similarities here in terms of really getting to know the needs of the user what might be barriers of existing um Services existing products and what might be facilitators narrowing down to the most important things creating ideas
Testing ideas and building a prototype um so um an has mentioned earlier um some of my work on co-production and probably the thing I’m most known for is this uh co-production framework um and we were really interested in that idea of sort of little bits of testing and iterative
Design as part of a wider development process that was also collaborative so this is what we ended up designing and I won’t I don’t have the time today to go into lots of detail and this happy to talk to people about it uh later but this idea that we may use different
Methods at different points and with different groups um so we had this phase of um consultation so it wasn’t collaborative it was more sort of can you tell us about your experiences your needs your what you think are pros and cons of the current situation then we had a phase of much
More collaborative what we called co-production um with a particular group um that we through this phase identified as most important um that helped us to draft an idea of an intervention um but then we went through this prototyping phase of well let’s go back to some of
The people we spoke to initially or the the groups the populations we spoke initially that weren’t involved here and do some testing and and see whether actually what’s been designed um could work has any issues and that idea of um iterative testing with different groups to reach a kind of final
Version um that was quite a long time ago now and uh things have very much moved on um so I was going to cover just a couple of more recent developments that I’ve I’ve been looking at and think are quite interesting and helpful in thoughts about well what is it that
We’re doing and why is it important um so leis and colleagues in 2019 um we’re trying to develop again particularly in health research um principles for a more systematic and reproducible process they talked about co-creation um so they brought up some interesting things that you’ll see over
The next uh slide or so they’re quite common themes that are coming out in the literature with regards uh working in a transparent way in these collaborative approaches um trying to work with a diverse group promoting equal rights across the group where there might be um uh Power
Imbalances potentially and how you know how we might do that um and they highlight evaluation as well so evaluating the approach so they talk about three phases of co-creation planning it conducting it and evaluating it um my colleague Haley Reid in decipher and some other decipher colleagues as well as those from
Elsewhere um as part of her PhD conducted a systematic review of co-production specifically in school health research in education settings but some of their findings were quite um would be more broadly applicable for our thinking around co- approaches um in particular thinking about what the core
Functions are um and core aspects are of of their co- approaches is from the different versions and examples that we see in the literature and again we see similar things such as how we might try and have shared decision- making and promoting and working with um diverse uh groups that represent our
Populations they also talk about how um co-production particularly in the education system but I’m interested in how we think of this outside of Education systems and perhaps in the health system can happen from an external source and be an ex external people supporting the co-production and then leaving or can build capacity for
Co-production in the system either on an individual level or on a system level so there’s some quite interesting um ideas there that I’d be interested to explore more and then Smith and colleagues in 2022 uh conducted a scoping review again co-production in health research and had a few lessons for future Co um
Co-production practice as well as research SE Arch so they’re talking about do we need some sort of guidance H do we need to come to an agreement on what these processes are um they also talked about um recognizing the skill set that co-production or co- approaches
Require um and thinking about how we we skill people up so a little bit of a crossover with um the idea of capacity building uh in in the above um um paper um and also recognizing the as within research within Academia some of the institutional and funding Arrangements that are required to make
Co-production happen we spend a lot of money on things uh to make big evaluation studies happen um and sometimes that same resource and support is not there for co-production co- approaches in our development or even in our evaluation um so there’s there are barriers there that need addressing and I’ve already mentioned
Vargas and colleagues from last year with the the the diagram I put with the sort of co-creation scene as a more umbrella term um so they talk in more detail in that paper of this this idea of that framework including that timeline of from initial identification to evaluation grindel and colleagues um did
A systematic review of co- approaches in health research specifically linked to knowledge mobilization um that particular focus of knowledge mobilization um but again some broader sort of ideas from that in terms of the different types of mechanisms that we see in co- approaches kind of kind of reflects some
Of these that you see um in Le and colleagues paper um and also the different activities that we might see kind of a a a focus on um workshops and meetings being a main um activity but they talk about some others but they highlight again a lack of evaluation
And uh messel um this year um have conducted a systematic review to explore the theories that underpin co- approaches specifically looking at co-production co-design and co-creation um and they sort of apply vargas’s um definitions um finding that whilst we have all this literature out there not very much of it talks about underpinning
Theory um and so maybe that’s somewhere where we need to think about and talk about a little bit more um Six Theories were identified in the review from I think 10 papers um empowerment theory was cited the most like two or three times um so that again that focus on those
Empowering uh collaborations and relationships so I’ve probably kind of touched on this already in talking about some of those papers and talking about what these things are in terms of well why should we be doing it um and I guess it may be a little bit obvious what the
Sort of the rationale for it is we want to avoid producing things that are not useful we want to avoid producing um things that are are not um not implementable um as health researchers at least um and I think particularly that idea like why would we spend a lot
Of time developing something that just can’t be done in practice um and that our Target population won’t engage with there’s this sort of quite broad rationale and that kind of just makes common sense um so we were talking earlier about sort of medical research Council
Guidance is is used quite a lot in uh in Denmark um so this does mention co- approaches in partic it doesn’t it’s not in the model but engagement of stakeholders is one of these core elements of whether we’re developing intervention testing it out implementing it engaging stakeholders at All Phases not
Necessarily co-producing co-creating at all stages but having that engagement throughout everything that we do they do talk about co-production in a bit more detail and this links to some of that rationale for why we should why we should be doing it um they mention as I
Said about that you know the level of Engagement that we do and where we co-produce may differ depending on where we are in those stages and depending on the context um but they they emphasize that we should um be focusing on you know co-producing our intervention so perhaps
This idea of you know it’s quite important at the development phase in particular um they say about open processes so reflecting some of that other literature I just talked about but they also say in ways that do not compromise research priorities and integrity and I’ll come
Back to that a little bit later cuz that’s probably a bit of a tent that we have in our co- approaches but they they sort of frame the importance of stakeholder engagement more broadly um as what the risks are if we don’t do it so we may not understand
The problem broadly enough we may be too narrow in our Focus um our intervention may not fit within the context that we are designing it for um it might not be feasible or acceptable and they also talk in regards with evaluation um the outcomes may not be meaningful or
Important or relevant to the Target population um and practice and policy as well so these things probably go without saying at this point based on what I’ve talked about already um there’s sort of different rationals that we have for co-producing co-creating co-designing I’ve put co-producing at the title here
Because the rationals are taken from a paper by Katherine Oliver and colleagues and they use the term co-production but I think we could agree that perhaps there’s apply to all of those co- approaches with regards um the utility what we may get out of that process at least as researchers and for our
Interventions um becoming more relevant being more relevant to the population being more appropriate um for the health problem for the context and the setting being more feasible particular particularly to those people who have to implement them um and particularly thinking about context specific and um fitting within
The existing system so that idea of you know we don’t want to design something really we don’t want to invest a lot of time and resource and money into something that’s just never going to work in practice no one’s going to engage with it there’s also a normative and
Political um imperative um that supports the use of co- approaches and stakeholder involvement more more generally we’re often using I mean particularly in the UK the majority of our research uh funding for health research is public money so we have a public duty to use that wisely and in
The most efficient and useful way um so again we want to develop things that will be have the most chance of being useful but also the importance of um involving people who the research is about in that process that they they’re given a voice they’re given a say in
What happens to things that impact on them and the potential benefits of that is that it may be more credible more legitimate and relevant um but beyond those benefits it’s um argued as something that we we should be doing as sort of a public and civic duty I’ve talked about stakeholders
Quite a few few times and thinking about this idea of why do we do it um we may work with different groups for different reasons um in terms of what they could bring to the co-production uh the co- approach um and I just I tried to sort
Of capture some of that in this table here thinking particularly we’ve talked about um service users Target populations the people who would receive the service receive the intervention that we’re designing um and I mentioned earlier about that lived experience of the the problem that we’re trying to do something about um
That they can bring and and they have the expertise and the experience in that that we most likely don’t have as researchers um that can help identify what’s most important to prioritize or focus on what’s most relevant and can help with things such as acceptability um of the intervention and
Engagement with it um and we’ve talked about like practitioners or people who may be need to implement the intervention um that can be helpful in terms of thinking of the context that we’re working with their existing knowledge of working with the target population and what’s been tried million
Times and has never worked or no one ever engages with um but also possibly their training needs if they need to implement the intervention um what would they need to do that and this may help with things such as feasibility Fidelity buying um if we’re working in health
System there may be another level with regards our implementation uh Team um so people who have more management responsibilities and may know more about the capacity and the resource to make things happen um so that can be particularly helpful in understanding structural barriers and trying to address those thinking about um adoption and
Sustainability and particularly thinking about sustainability as well um I mentioned earlier people who might fund the intervention um but thinking broadly in terms of wider policy um uh stakeholders um we don’t really want to be working with implementers and Target population on all these interesting innovative ideas that are important and
Feasible to them and then we told well we we can’t do that there’s no Mone for that and your co-production Was a Race of Time because that’s just never going to happen so actually the involvement of people who will can bring to Bear some of those constraints whether that’s
Before the co-production process whether it’s separate stakeholder engagement or if it’s part of it but an important um thing that we may need to focus on and I’ve put this kind of other box at the bottom for us in decipher we do a lot of work with children and young people and
It’s very important for us to both understand the child’s experience as well as parents um and working in school systems not necessarily just people who will implement but other people within the school system as well um so there may be other people that can understand those structural barriers or acceptability issues as
Well so I’m just going to finish as I said with some Reflections on challenges of using co- approaches and I’ve touched on a few of these already but we’ll kind of try and bring them together first I was just going to talk go back to that paper by Katherine Oliver and colleagues
In 2019 who actually their paper was called The Dark Side of co-production they were particularly thinking about some of the challenges and costs of co-production or costs to co-production um so they present some interesting um discussions around costs and challenges both to um researchers to research and to stakeholders as well as
Practical things as well um so they talk about um some quite important considerations with regards I mentioned earlier you know we would need to dedicate resource and time to this in the same way that we do to our um other elements of our research and sometimes that doesn’t happen or it’s not
Available or it’s not supported by our funders um they talk about cost of research so this thing that was in the medical research guidance as well around um credibility and utility and this idea of well do we favor scientific evidence and sort of rigorous methods more than uh stakeholders opinions valued and what
Does that mean for the outcomes of our research and there’s a real tension around um what what gets published and what gets funded and and sort of supported um but they also talk about costs to researchers um both in sort of you know developing and managing relationships and that investment of
Time as opposed to other things that researchers should be doing and and are valued for um and so they kind of conclude around having to make decisions about at what point when where we can co-produce and where we might use other methods um where we might be limited by some of these constraints
Um in a follow-up to that paper Williams and colleagues um quite uh did an in-depth critique of Oliver and colleagues paper um about some issues that they saw within this and particularly um some of the definitions around what co-production is and kind of more of a focus on engagement with with
Practice and organizational stakeholders um more than thinking about working with the public and there are differences and different challenges and things to think about um between these um and one of the things that they highlight is that this idea again of Academia and some of the structural um
Inequalities in place that can really uh be sort of the underpinning issues rather than um those those challenges so talking about poor like research practice more than um uh the co-production or the co- approach that’s the problem and they say this is partially an issue of a term they use call coity
Which is this idea of this increased appetite and emphasis on participation in research generally um and that growing terminology of co-ords and that can mean that sometimes uh we can flate meanings and practices from different um traditions and may lose some of the meaning of what what Co
Co- approaches really are when they’re sort of combined with other forms of collaboration or involvement and engagement and that some of these really um important um uh sort of egalitarian and um empowerment elements of co-production can really be lost particularly when we start thinking about all the challenges
To researchers and not necessarily to everybody else who’s involved um so I had a couple of things to add to those and I’ve mentioned already um some of those um so we’ve talked about like open approaches being very open being um uh sort of working in equal partnership um with uh within our
Co- approaches um but sometimes it’s difficult to balance that with constraints of our research if we’re trying to be methodologically rigorous and how do we how do we balance those things what do we give more weight to um an example is um in the study that we conducted where we developed the
Framework I showed previously we had a very collaborative relationship with the implementers who were involved in the co-production um of the intervention um to the point that we had really um High commitment and buyin as a result of their involvement they you know they had a shared ownership of that
Intervention that they you know developed more than we did as researchers their their experience with the the intervention we were adapting was um so important to to that development process but then there came a point where we’re like well we need to do a feasibility study now and really you
Need to go and implement it and we need to measure the Fidel of your implementation and all of a sudden uh if we were following if we were going to follow that protocol as we had set out they suddenly need to stop being part of the co-production team stop being part
Of the this development and go and do their job and we’ll just watch them and measure them and there’s a real tension and strain on um on just those relationships but also um they would probably would like to keep thinking and refining the intervention as they implement it but we’re saying oh just
Implement it as it’s written please and like there’s so real tensions there I don’t necessarily have all the answers to these things but just Reflections on on things that we come up against and linked to that is this idea of experience versus evidence so we were talking earlier about um well what do
You do if in you’ve got an Evidence base of things that we know that work um and the things that are coming up in our co- approaches are the opposite of that or kind of contradict what the evidence says what do we do and there’s there’s different things that you know
Approaches we can take in terms of bringing the evidence into the conversations um but someone I was talking to yesterday was saying well um we’ve got loads of evidence in physical activity for example of if you do these exercises your health will be better but nobody does it so what’s the point of
Having that evidence and maybe we need to understand more what people might do and what would be more appropriate and acceptable to them and easier to do more feasible to do that then might may also have health benefits so it’s again it’s trying to get a balance between that
Tension I’ve got what happens after the co-work ends um so again this idea I I you know talked about you know when you might stop co-producing or co-creating and then need to do something different and that you know what does that mean for the relationships built um there can
Be really positive things created out of co- approaches and when even if it comes to an end new relationships might be formed that continue and have um sort of a ripple effect of benefits um but if we’ve developed something um that um really fits the context and really fits
The population because of the collaborative approach to doing that with that population with people working in that context for how long does that remain the case and at what point has the context evolved um has the the problem and the population evolved to the point that we’ve kind of lost that
And it’s a more of a general issue in intervention research from a complex systems perspective um but it it’s a consideration for our co- approaches as well would we do it again would we need to revisit it um and again we’ve had that in the um the intervention I
Mentioned earlier from our framework uh publication that that team that we worked very closely with um a lot of them have moved on to other jobs now and that’s quite common in particularly in Health Services um so uh that buy in and commitment even though it may still be a
Relevant and feasible intervention there’s not a team now who’ve been involved really in depth with the development of the intervention that are really committed to it and have a real shared ownership it’s new people who were never involved in that in that process um a couple of final things I realized
Pretty much at at time um ethics and data protection this is something that I think it’s different in different countries as well um but the whole approach of if you want to publish and talk about um uh your research that has involved co- approaches you’re often asked for
Your ethics um and that you know you probably got an informed consent process for your participants in the the evaluation or or feasibility work but you may be asked about well who are these people you’re talking about and did what did they agree to to to you publishing this information did they
Agree to um uh you know you talking about what was discussed in the workshop thought or whatever it was and there’s a bit of a tension of well if you’re trying to have an equal partnership but then you’re a researcher saying please sign this form so that we can you know
Talk about it in the future in a public sort of um open sort of platform um again has sort of potential issues and I think there’s I spoke to somebody recently who said oh if it’s qualitative research we don’t need any ethics and Co co- approaches would be part of that so
We’re fine um but then they they find they have challenges publishing that work because the Publishers say where’s your ethics statement so yeah I don’t have the answer to that thinking about you know the data is it data that is part of our discussions um what happens in our co-
Approach the discussions that happen the information that is developed the idea for the intervention is that data and that we have to treat it as such so yeah um I won’t go into detail of PPI versus co- approaches but there is debate in the literature about how similar or
Different they are and whether you know how much we should see them as similar and different things and finally recording reporting evaluating so it’s been highlighted in some of that literature of that we don’t evaluate enough and um in terms of we don’t really have an Evidence base despite all
These sort of Common Sense things about making more feasible relevant interventions that you would then hope would be implemented better and if they’re implemented better hopefully they got better chance of working um there’s not really an Evidence base to support that not yet um but also evaluating our approach um to our Co
Approaches are we what have we learned how to do it better through our our processes do we have um are we reflecting on um uh the process and everyone’s involvement and whether people are you know um not being able to have their say or input and that sort of
Thing and whilst they were reporting tools and guidance for for public involvement we don’t really have that for co- approaches um which and there’s some problems with those tools as well um so as a final Point we’ve tried in a recent paper to address some of these issues
Um with some ideas around um uh by no means addressing all of those things but particularly this idea about a reflexive process and um how we might try and um reflect on and address power imbalances and promote Equity where we we know not everyone will be equal in these
Situations but can we promote at least in the process some form of equity this was in the context of implementation research with colleagues in the USA um but again hopefully there’s some principles there that might be useful um outside of that as well I’m going to
Stop talking now cuz I know I’ve run over um I can share these slides if it would be useful um afterwards um because the references might be useful um I as always have to put up the funding acknowledgement from um our research that I presented um but yeah let’s get
Into the discussion thank you