Report transcript in: Value of Copro - Jane and her experiences as a researcher

Please Report the Errrors?

was it?

All right. OK,

so, um hi, Jane. Do you just want to introduce yourself?

And then, um if you want to share a bit of your experience about

co-production and health inequalities research that you've been involved with,

that would be great.

Um,

so,

yes, I'm I'm one of the, uh I'm a programme manager with, um,

the applied research collaboration.

Uh, n I HR programme.

Um I'm based in the north West coast region.

Um, and, uh,

wow,

what would be, uh,

right?

I can I can edit out any Any email?

Um,

I suppose I I guess my experience of co-production is, um,

around applied health

and social care research. Um, and implementation of that of that research

and very much

working under the premise

that

if you have,

the relevant people in the room So the the end users of your research. So,

um,

your commissioning organisations or your provider

organisations or your clinicians or your,

um uh, physiotherapists or whatever

along with, um,

people with lived experience of that of those conditions or members of the public.

If this is a population type intervention,

then you're more likely to get something

at the end

that is implement

that people will actually want to,

um,

either deliver or,

um be, uh, a recipient of that of that service or that intervention.

Do you have a a specific example of

where that has happened, where that's made a difference.

So, um,

suppose the example, uh,

that's probably quite unusual.

Is is I mean, I think of it as quite a sort of a nested co production in that there was

I think you could

I think you could call it co-production on on lots of different levels. So,

um,

we ran a, um

a series of evaluation workshops,

um, for teams of of, um

primarily, um,

practitioners and commissioners who wanted to understand better about,

um,

how effective?

Um, some of their services were what they needed to do,

how they how they should be evaluating them, to show how effective they are.

Um, and also,

you know, whether they needed to to tweak it or just invest or whatever.

So you, you know, using using evaluation in that decision making process is,

um and this was around, um,

keeping basically keeping people out of hospital, whether that's by,

um, preventing them going in in the first place or preventing

re admission once they've been discharged.

Um, and because

because of the the, um

uh, because of our own

particular sort of strap line, if you like, we're very much focused on

action to reduce health inequalities as well.

Um,

and so

to do that, what we

what we stipulated for these teams that we were helping with developing

their evaluation plans and then going on to do those evaluations,

um, was that they needed to really to bring in people,

um,

patients,

carers, service users, members of the public in

to, um,

work with them on their evaluation plans on their evaluation projects as well.

Um,

and I think, uh, I think we're

fairly successful in doing that. I think we had,

Oh, gosh,

it's probably about 30 teams in all,

and I think

two thirds of them, actually, in the end,

kept together and produce their evaluation

plans produce their evaluation reports.

Um,

papers were published, implementation plans were published,

and I think each

each side. Well, when I say side, there's three components

in that got quite a bit out of it. So we did a as A as a team as an academic team.

We did a, uh, an evaluation

of of, Of how? That

how that had gone,

Um,

and,

you know, speaking,

speaking to people both anecdotally and also as part of the evaluation itself,

you know, we could we could see from

the, uh you know, some of the some of the professionals that have been involved,

They were very much

we weren't really sure about

what was why we needed to to to have patients and carers in the room in the team with us.

But actually, it's,

it's proved really beneficial. Um, we've got such a lot out of it,

particularly when people are looking at,

um when the the evaluations were looking at things like,

You know, what is the pay? What is people's experiences?

Um,

and

you know, things like access. How easy is it to access?

Well,

the patient could actually tell them how easy it is to get to a particular clinic or,

you know, when they're thinking about

yeah, when they're thinking about patients, experience,

particularly those that are more vulnerable, have less resources.

And you know what? What?

What do they need to take into

consideration when they're thinking about implementing things.

So I suppose that's my best. One of my better best examples.

What?

What difference did it make for the, um,

commissioners and the clinicians and people having

that lived experience voice, if you like,

or those people who maybe wouldn't normally

be part of those conversations involved,

think

I think it helped bring.

I think it helped bring it to life

for them.

Um,

and

I think it also helped us all think

more clearly and more critically about,

um,

health inequalities.

And you know that that gap between

what we think is

gonna work for everybody, But actually, when you come to talk to the people that

are gonna be the recipients,

uh, of of, of, of these services, these interventions or whatever,

um,

think it really, uh,

reminded them that,

you know,

you do really need to speak to the people to be able to unlock that experience.

You can't just assume that

because you're opening a a clinic in

in a particular area, that everybody's gonna be able to

access it,

Um, to the extent that they need to access it.

And so did that.

Then change the the output, if you like, or the outcomes in terms of the actions,

Um,

for people,

I think it I think it did,

Um, because I think it, um

I think it helped people focus more on

are inequalities.

And how,

um,

how they might change things, how they might improve things.

Mhm.

think it

so they I think it. I think it improved things in different at different levels.

So I think in terms of the evaluations,

I think it it it had some benefits for the individual projects.

But I think it also had,

um,

benefits in terms of, um, people's ways of working.

in the future,

I hope they said

that's something that they would

be much more comfortable to do

and also would want to do,

um, to

engage patients and service users in evaluations so that they can understand.

Well, what do we need to ask people about?

Yeah.

And how how can we interpret? You know, how would we interpret this? This data?

What would it mean to people

and and what

what

what, if any, were some of the challenges that you you faced,

um, involving people in that way?

I think, because of

because of where people were starting,

um, with some of their projects, some of these projects have been, you know,

they they

OK,

they'd already gone some way to towards

thinking about how they would want to evaluate it.

And so,

um,

you know, bringing somebody else in to,

um,

you know, look over what it is that you're doing bringing in a new member of the team,

which is effectively, what we were saying, This is what you have to do.

Um,

you know, it's really uncomfortable

and, you know, for on all

you know, for for all parties. And I think you know, some of the

some of the members of the public felt a bit like they were,

um, parachuted in. And

I think some of the, um

uh,

evaluation

teams were thinking, Oh, well,

why do we need to do this? It all feels a bit awkward.

Um,

so, yeah, I think those were the Those were the main things.

Well,

there were also there were also some of the practical things in that I think

you know, in hindsight, people

weren't necessarily clear about what it was that they

would be able to do so.

You know, in the NHS, it's really difficult to to to share data and stuff, and and

people have been, I think,

got the impression that they'd be able to help with that.

And actually, when it came down to it, they couldn't.

Um so I think it's really important to be able to,

I think it's important to think carefully about what it is that you want

your team members to be doing

and whether practically,

uh,

ethically, they are able to do that.

Mhm.

And so

any anything that you think might

help to,

I suppose, build those relationships maybe, um,

differently.

I think it's I think it's to try and try and start the process as early as possible.

Um, I I know it's not always possible to do that, you know, you have,

um, edicts from wherever that say right, I want you to evaluate this or right.

We're gonna change this service now.

Um, and it, you know, it's quite

difficult to to to bring everybody together, right at the very, very beginning.

Um,

but I think that's, you know, that is a key message.

Get, you know, get people involved.

Just as as as soon as as soon as you can as early as you can.

think. Be clear.

Um,

be clear with people what the

scope is. What you would

what you want help with,

um,

and that that's that's what they're you know. And that's what they're able to do.

Um,

uh, what was the question again?

Very good question. What was the question?

Um, I think it was, um I think in my mind, I was thinking, um,

no, it's gone

completely. What would help Did you

say

what might make a difference? What would help? Oh, yeah. Yeah.

I mean,

I suppose one of the things that we did was

was actually bring people bring people together in a room.

Um, this was pre pandemic.

I don't know whether whether I suppose you could still do it online, couldn't you?

Or maybe, you know, there's benefits of that, because people will be,

you know, you don't have to do all the travelling and everything.

Um, you can fit it in with with different things.

Um,

but yeah, it is the time to make those relationships, um

and

yeah, the time and space.

Yeah.

Yeah, it is, it's It's important, I think.

And we we we sometimes underestimate that, actually,

um, but it's the relationships that can make the biggest difference, Um,

in that sometimes,

um, and any any sort of, um, feedback directly from

people who were involved. Um, from a public perspective

in terms of the difference that it made,

I think for some people, it it it made quite a personal difference to them.

Um, you know, we've had people go on to,

um,

other.

It's given them the confidence to

go and do other things.

Um, whether that's for the training, Whether that's so,

there are opportunities working with research teams or,

um uh,

other things entirely.

Um,

I think it's also given some given some people a real sort of

buzz and an interest.

Um,

uh, those things aren't necessarily

very easy to measure, and they're not.

They're also not necessarily things that funders

particularly value. So

we might value it, because we you know, we see how

how somebody has, you know, come

become more confident in in, um

uh in all that, you know, in lots of aspects of things, not just not just in in in,

you know, not just not just within that team, but,

you know, they've gone on to do other things, like, you know,

maybe drive up on the motorway on their own,

you know, stuff like that. Funders wouldn't necessarily say.

Oh, that's a great impact.

But actually,

that's quite a nice thing to say, really, isn't it?

Do do you think we should look at evidencing those kind of impacts more?

Probably. Probably because I suppose it depends what? You

It depends on what you want to do in your philosophical approach, I suppose. I mean,

you know, if this if if if we really do want

people to

I don't know.

I mean, people's health is really it is linked to, you know, their their their,

um confidence and

self esteem. Et cetera, et cetera. If this is something that,

um can can boost that, then

you know that's a

that sense of purpose.

Yeah.

And then And then I suppose the

the the other kind of thing that goes through my mind is

what do you think the value then is

to the wider kind of research?

Um, environment that you're in is is there learning from that in

what you've done in terms of involving people more

broadly in in some of the research that happens,

or is there maybe still a reluctance?

Um,

I think

I think we're probably in a bit of a bubble.

Um, I think within,

um,

within a

an an applied research within that sort of arc space.

Most of us talk about co producing stuff,

whether that's,

you know, dissemination plans, whether that's

research studies, whether that's research priorities.

We talk about that.

But I don't

I I I suspect we're a bit of a bubble,

and I don't know how much that happens

outside of

of that,

certainly outside of that applied,

Arena.

So there's a distinction there between some of the more academic

research and what you're doing in terms of an applied

kind of

dealing with what's actually happening.

And I think even even

even within that bubble, um,

I I it's not perfect.

Um, I'm not sure that anybody's actually,

I don't know what the

don't know if there is conclusive evidence that,

um,

cop producing something

actually makes for a better

product

at the end of the day.

Um,

I suppose

I I

suppose the the bees and meat can.

The reason I continue to push for it is because

it feels like the right sort of thing to do.

um,

yeah, no, that that makes that makes sense.

Um, that that thing, it it is something that you you need to feel more

in in some ways.

Um,

and that makes it hard.

So then do you feel that you get a lot of support from those around you

in in terms of what you're doing? Or

is it are you fighting?

You know your own corner with this?

Um,

well, as I say, as I say within the bubble,

it's

Yeah.

Yes, there is support. Um,

outside of that,

uh,

I'm

not sure, because,

you know, applied research is only quite a

I mean, talking from a you know, an h e. I perspective.

Um, it's only a small

part of what

universities do.

Um, it's only a small part of what the research community does, so

I don't know if, um,

yeah,

the institutional bits of it

are a struggle. So, you know, when it comes to,

when it comes to working with members of the public when you come to want to, um

uh,

you know, with, um,

uh, pay them for their time.

It's It can be problematic.

You know, you have to set up systems to to do it. And,

um,

you know, all that rigmarole around, uh,

identify whether they've got right to work and all of that sort of stuff.

Um,

And also

being

people who aren't in full,

you know who who who don't necessarily have an email

address with their work or they don't have access to,

um,

good wi-fi or they don't have access to,

um, computer equipment. They don't have access to a a good library.

It's, you know, and

and the journal articles and stuff,

that's quite problematic as well.

Um,

so I suppose it's

I suppose it's difficult to,

um,

give them the parity of esteem that I think we would like to be able to do.

That bit isn't routine.

hm.

Is there anything else that you'd like to add

Jane before I stop that?

Don't think so.

Do you think you've got enough material?

Yes,

I just put it back on.

Oh,

you know somebody else who's who's who's

a you know whether this is directly as a directly

related to this or not. I I don't know, but, you know,

as a consequence of working with us, is,

you know, got on the motorway and driven on the motorway, which,

which they would never have done before.

Um,

you know, I think,

yeah,

yeah, it it it

it makes it.

It makes a difference to people when you're talking about health inequalities.

Um,

you know,

the fact that people have that sense of purpose in in terms

and that leads on to other things just from being involved in,

you know, more involved in what impacts their lives, Actually,

rather than being passive recipients of services that are done to them?

Yeah,

that makes can be huge if it's making a difference for them,

And that impacts on the way the services are then delivered

the potential for it. Making a difference for the people is

much bigger.

And

yeah,

it it does. It does make sense, but I don't I don't know that we

and that's part of what we're trying to kind of pick up, I guess, in this process, Um,

but I don't know that we really stop and think about the impact

that that

or or how we evidence that I think beyond just the widgets that we

normally have to. So I suppose I suppose one way we can evidence it is that,

um,

you know, we've got a really strong, um,

group of, um, members of the public who

continue to work with us and have worked with us for,

you know, many years now.

Um,

and I don't think they would do that if they did not see

Thanks.

What they were doing was,

um,

benefiting

them

or that it was benefiting.

Um,

the, uh you know, the organisation wanted a better word.

The the the the research programme.

I don't think they would stick with it because, you know,

sure, there's, there's, there's that there are failures involved. But

they're not that,

you know. They're

all right.

They're not.

Yeah,

yeah, And that's interesting in itself,

I think not enough to go to Barbados or anything like that.

Maybe scared.

But

there's There's a longevity in that, though,

that you describe and and I think often in the in the consultation engagement world,

there's a temptation to say, Oh, you know, we've you've been involved for, You know,

six months a year.

Now we need we need somebody else. Um,

but actually,

what you're describing is and much longer term not probably not for everybody,

but for some of those people.

A longer term investment and a longer term relationship, which is what

helps.

Um Mm.

Yeah.

I mean, there is the debate about whether people get professionalised,

but I I I'm not sure that that's necessarily a

a problem. Because, actually, if you're if what you're wanting to do,

if you are co producing, then you do have to level some of that

hierarchy. And

let's face it,

we're all professionals. So why shouldn't

Why shouldn't everybody

you know? And if if, If you want to hold your own against, um,

you know, as a senior clinician, a senior statistician,

senior, um, commissioner or whatever, then

you know, you you do have to enable people to.

How's

that?

Hm?

You know, whether you call that professionalism or,

um, you know, long experience or whatever you call it,

You do have to

allow them much,

because otherwise you're just maintaining that hierarchy.

Yeah, it's that learning,

I think and and I don't think I've even really thought of it in that way before.

But

people need that time to learn and experience what

the other side of it in order to be able to influence it,

I guess. And understand.

I mean, I I was having a conversation with, um

AAA colleague who, um uh they run a a

centre within the university, and they're wanting to

build up their, um, public involvement and engage.

Yeah, public involvement, really, Their p p I work.

Um, and they were expressing a concern about, you know, um,

professionalisation of of of, um,

patient, patient representatives or whatever you wanna call it

and

thank

you.

It it

it kind of struck. Struck me then as to why? Why? What is it that we're worried about?

Why are we worried that

they might become good at it?

You know, isn't that

Isn't that what we want?

Don't don't. We want to be able to

understand each other

rather than

get them to understand us up to a certain point and then move on. It just doesn't seem

it doesn't seem right.

Yeah, it's good.

I'm gonna stop this

now.

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cat@curatorsof…

Post date

12/06/2022