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Report transcript in: Shoba Talks about Co-Production
Please Report the Errrors?
To this
You should get a notice
to
say that we're recording,
um,
and first of all,
could I get you to
introduce yourself and tell me a little bit what you do?
Yeah,
absolutely.
So,
uh,
my name's Shoba Podeal.
I'm an academic GP,
so I,
I work as a clinician in the NHS,
but also as an academic researcher at the University College London in,
uh,
in London,
obviously.
Um,
and I research,
um,
health inequalities and,
um,
access and
outcomes from
the health service and,
and how people use it.
Um,
so I'm really interested in this topic,
and I'm really interested in co-production.
It's a method that I've tried to use
with various projects before,
both with,
um,
public involvement,
so public
advising on my research and within the research itself.
Um,
so,
yeah,
I'm really interested in different approaches and how to make it equitable.
I've tried various
approaches,
and so,
yeah,
I can reflect on that.
Um,
also,
but yeah,
I think my,
my conclusion from it has been,
there's a long way to go in terms of how we do co-production well.
Um,
so,
yeah,
just really interested in learning about that.
So can I ask you,
um,
first of all,
what has
your experience been of co-production?
So
I,
my experience of it has been
mostly as a facilitator of it.
Um,
so inviting
members of the public to get involved with research projects
that I've been involved with,
or just public engagement projects,
um,
and trying to use
co-production as a method of
doing that,
um.
as a way to
to increase and improve access and
improve the way the research is done,
um,
because it's such a great method for
Involving the public and making sure their voices are
reflected in the work and the outcomes from it.
So I guess to give a couple of examples,
um,
I did a
a public
Engagement project looking at how we
increase global majority involvement in research
a few years ago,
using co-production where
this was still very much post COVID,
it was online,
it was a series of workshops that we did on online.
Um,
but we also use photography,
participatory photography as a tool
for the members of the group to share their
stories and share their feelings and their opinions.
And that worked really nicely.
Um,
so we,
we'd have our chats online
as a co-production group about
what we wanted this project to look like and what we wanted.
To work towards,
and then we'd all go away and take our photographs and,
um,
bring those back.
And that,
that worked as kind of our output from the project.
Um,
I've done similar with video as well,
using,
um,
digital,
but we called it digital storytelling,
so inviting people.
Well,
initially meeting with a group in Newham,
so this was looking at um digital skills and digital access to health services.
So working with them in person,
there was a group of us,
3 of us facilitating.
We worked with a group of about
8 women,
um,
through a charity in in Newham where we did face to face workshops with them.
Again,
co-producing the aims of the project
and,
and the approach to the project.
Um,
and ultimately producing a set of videos,
short films that each of them produced themselves,
telling their stories,
which worked really nicely as well.
So those are two of the main projects I've done
using co-production.
What would you say the value of co-production is um for you professionally?
Yeah,
I think it,
like I said,
I think it's about really meaningfully involving the public,
because there's a lot of discussion in health research,
particularly over the last couple of years,
coming from the top,
from funders like NIHR,
so the National Institute for Health Research,
who fund a lot of my work about
the importance of public involvement
and
But one of my fears is that it can turn into a tick box exercise where,
OK,
you can say I've recruited these two people,
they're on my.
They're on all my paperwork.
Their names are on my paperwork.
But what are you actually doing
to involve those people and to make sure that their opinions and their
voices are reflected in the way that you do your work?
And
what I really like about co-production is
this idea of the,
the level hierarchy and taking away
your role as the expert,
as the researcher,
and just working together to produce
something meaningful.
Um,
And it has its challenges,
for sure.
And I think within,
you know,
research within academia,
there are people who are more or less experienced in it and more or less
excited about it,
and it can be quite difficult to bring the whole research team on board with it.
And I often find myself being the one who's really pushing.
To do it,
um,
and it takes up a lot of my time as well.
So it,
it has its challenges.
I think the benefits are
that you can come away feeling like you've,
you've worked closely and meaningfully with members of the public,
and it's their voices who are
reflected.
And
I think I take that quite seriously because of the topics that I research.
So I,
I,
my main focus is looking at ethnic inequalities,
so.
Inequalities in in access and experience of
the health service for the global majority
um
and also for,
People from lower socioeconomic backgrounds as well from,
so I'm looking at I'm doing a project
at the moment on digital exclusion for people from
Leeds,
a part of Leeds,
which is one of the most deprived
areas in the UK.
Um,
so looking at that as well.
And really it's impossible to work
with those communities without taking a co-production
approach because.
Those traditional research methods just
don't work for those people.
They,
they,
they're,
they're not experienced in that,
or they're not interested in,
in doing it that way.
Um,
so the way to engage with people and the way to
get them interested and involved and excited about the topic is,
is to involve them meaningfully.
And I think co-production does that really well.
So you,
you touched on this earlier,
so how many people like you are facilitating coproduction spaces?
So as someone from the global majority,
are you,
um,
somebody that
is,
you know,
other people like you facilitating these spaces,
um,
and then the next bit is how well do you think
co-production serves um,
a racialized people?
Yeah,
those are good questions.
I think
it varies.
My experience is.
That there are some people who
try to take a co-production approach more than others,
um.
And again,
I think that's,
you know,
experience,
um,
and also,
Research is,
it has so many um
Challenges in terms of time and budgets,
and I think a lot of people stick to what they know
and what they've always done because it means they
can get the work done within the time needed.
And I,
and knowing that co-production takes more time and energy and
just a different way of doing things,
I think.
For some people that presents challenges,
um.
As
I think as someone from
the global majority,
I,
I think it,
it's inherent in me that I,
I take it very seriously,
and I think
it's important as an approach,
because I want to increase
representation from,
um,
similar communities in my research.
I think.
I've also built up quite a nice network of colleagues who
do similar work and have similar interests,
so it's been really nice actually to get to know
people from across the UK who are also from the
global majority who also are really interested in representation and,
and co-production.
So I think there is quite a nice
network and group of people that's developing
who are interested in this,
this kind of work.
Um.
And,
and your second question about
the benefits for
people from the global majority.
I think it's about.
Access and engagement.
So we know that we have a huge problem in
both quality improvement in the health service and research in
the health service with underrepresentation from people by the majority.
And so the question is,
well,
how do we change that and how do we fix it?
And
The traditional methods that we've used historically just don't work for
our communities for various reasons,
um,
you know,
language,
culture,
understanding.
Relevant
um
You know,
cynicism,
trust,
all those things.
So
I think what co-production does quite nicely is
it kind of invites people in as equals,
um,
to share whatever knowledge and experience they have,
and it values whatever knowledge and experience people have.
And I think making that point and emphasising that point to people is really
nice to be able to do,
because I think there there are communities who feel like,
well,
we.
We have
our own experience which might not be relevant to the research,
but actually it quite often is,
and it just showing people that that's valued and.
Take it seriously,
I think is really important.
Can I ask you,
like,
so we've heard a lot that
global majority individuals involved in co-production have
had
experiences that we probably would like to avoid.
Like what's different about
co-producing with global majority individuals?
Yeah,
I think that's a really important issue as well,
isn't it?
I think.
Acknowledging
Difference is also important.
I mean,
I talked about the levelling of the hierarchy and that being really important,
but
alongside that,
also acknowledging
that everyone has different experiences and different knowledge
is really important too,
and I think sometimes when you have got a diverse group.
It can,
and,
and especially if
the global majority members feel like a minority within that group.
And I've been that person,
so I can speak from personal experience.
You can sometimes feel
like your opinion is less important or
that it's less important to speak up,
and that you kind of let the majority drive forward the agenda.
And I think it can be really
difficult for people
from the global majority to speak up and to try and,
and,
and.
Push there or.
Bring to the front their opinions and their voices.
Um,
so what I always try and do.
Is
to either have a very mixed group
or I've quite often had,
A majority,
global majority group,
so.
I kind of flipped the table
so that
that global majority become the majority within the co-production group.
And that's worked really well for me
because what I have tended to find,
and they can be from different communities.
So,
you know,
I've,
I've worked with
groups where I've had black African,
Black Caribbean and South Asian representation.
And obviously all those groups are
completely different.
Um,
in terms of experience and,
and
challenges,
but it's worked well because there's a sharing of.
Um,
Experience in terms of feeling excluded or feeling underrepresented and a,
a willingness to want to share and and listen to each other's stories.
So I found that's worked really well for me.
Um,
I think it's when you replicate.
What has happened historically in terms of excluding
global majority people
that it becomes challenging for them.
Because it just feels like more of the same,
and
nothing's changing,
and no one's listening.
So I think
for me,
what I try and do is,
is really change
that and take a,
a sort of
completely different approach.
I think it helps when I'm leading projects and I'm from
the global majority as well,
because I think you need that visible leadership
of,
OK,
this is someone who's actually
Taking this seriously and not doing it as a tick box exercise,
um.
So that,
yeah,
I think those are some of the issues.
So we started off,
like,
in this project,
exploring generic,
um,
experiences of co-production
and
what that felt,
um,
and looked like from global majority.
And
what we learned really early on is that people's experience
has
experienced,
um,
racism and
not to shy away from that.
Yeah.
I'm talking about like,
how do we.
You know,
how do we do co-production if we're not
paying attention to racism,
we're not having to
some of the things that you started to talk about which is the
historical legacy of
um or race.
Um,
and then,
how do you have any examples of how you kind of centre that in your work?
Yeah,
I think you have to really name it like you've just done,
um,
and call it out for what it is.
And I do that with all of my work because
I put anti-racism in the title.
It's in the funding bid,
or it's,
it's,
it's kind of there from the beginning,
that that that's what this is about,
and I don't shy away from that.
Um.
And I think I'm lucky that I can now do that.
Perhaps 5 years ago if I tried to do that,
I might not have been
as successful,
but I'm finding the reception to that from.
The university that I work at and the funders that I work with is
good at the moment because I think there's an
acknowledgement that we need to work on that.
And actually there's a
an interest and
an encouragement for people.
To do things in that way so that everyone can learn from it.
So the things that I do,
I try and share as widely as possible.
Um,
as,
as I know you do,
and,
and,
and the rest of the co-productive collective do as well in terms of,
let's use this as a,
an example of learning and share it with everyone.
So I think it is about being really explicit from the get-go and
acknowledging from the get-go
that
This is about
racism and,
and taking an anti-racist approach and how
we can do that and how we can change things so that we're taking that approach
and not shying away from it.
And I think
we're in a time now where we can do that,
which is great.
Obviously,
it's not ideal.
Um,
still,
we're not,
we haven't achieved that yet,
and we're still working towards it,
but I think there's a willingness there from
institutions that historically have not
shown an interest,
and there's a long way to go.
I think we're at the beginning of that journey,
um.
But I think
Just having that interest from
big institutions is a good thing.
So I would encourage other people to be really explicit about that
and
Um,
yeah,
to just talk about it as much as possible.
I think the more you talk about it,
the more you name it,
the more comfortable everyone becomes
talking about it as well,
and
it's.
It's people who historically have been the
majority or seen themselves as the majority or,
you know,
superior in some way,
but
that also need to be encouraged to talk about racism,
because I think
sometimes it's that group that feel less comfortable talking about it.
Um,
so we need to encourage everyone to be able to
talk about it and to question themselves and reflect themselves.
And that for me is what anti-racism is all about.
It's about questioning your own.
Values and
practises
and
being really open to learning new ways of doing things.
So never claiming that you're
the expert,
even though I can lead several projects.
I never claim to be the expert.
I,
I'm always there with the question saying,
oh,
how can we do this differently?
And I want to learn from everyone else,
and I think it's,
it's about that as well.
Uh,
you co-production.
I hope we've made
more progress and that it,
it becomes the norm in a way,
um,
that
everyone acknowledges the need for anti-racism.
It's built into every project somehow
there are formal ways.
Of
including it in projects and
credentializing it.
It should be on every funder's,
um,
you know,
application forms.
What are you doing
to make sure that you
are anti-racist.
There should be standards that we can all,
um.
Subscribe to,
and there should be good practise that we can all
aspire to.
Um,
and co-production should be much more common and much more normal
as an approach
than it is at the moment.
And I,
I,
I,
I hope that I think we are moving towards that.
The work that the research that I've done in anti-racism really,
so it,
it just comes up so much that that is the approach that we need to take.
Co-production with communities as in,
you know,
every recommendation that comes out of
the research on anti-racism.
There's a realisation that that needs to happen.
I think the next step needs to be taken in terms of,
OK,
we know this is the way we need to do things,
but how do we do this well?
And how do we do this meaningfully?
And how do we
do this without it becoming a tick box and just jargon and language.
And,
and talking to a lot of
healthcare professionals and
healthcare managers and leaders in,
in healthcare and integrated care boards,
I think that those are the questions that they're grappling with
at the moment is,
OK,
we know we need to do this,
but we don't really know how
to do it.
So I think there's,
like,
there's,
there's a real
interest in learning at the moment.
I ask you about like your own lived experiences
based on
how much you.
A lot of people have talked about um
and kind of riots
and the murder of,
uh,
George Floyd,
um,
like really.
Kind of centering that there's a need to do this,
but like,
so I'm just wondering about your own experiences.
Yeah,
I think it's a really interesting time to be talking about this,
to be honest,
given
events of recent months.
I mean,
I was away during
the race riots,
thank goodness.
But just coming back and hearing about it,
it is.
As someone from the global majority,
it's terrifying.
Um,
but it's a huge wake up call too that,
you know,
racism really does exist in this country and
at a level which makes us feel unsafe,
and I
would never have wanted to have felt this way in 2024.
I.
Have a 4 year old son who's mixed race,
and about to have my second child,
and bringing children into a world where,
where racism is so,
you know,
present still is,
is really scary.
Um,
so I think it's just more relevant than
than ever,
and I think what
recent events have taught us is we need to look at the underlying issues
here.
Yes,
it's great that.
Those perpetrators are being punished,
but what are the underlying issues that have led to this happening,
and
it is,
it's,
it's systemic structural racism that has existed over.
Such a long time and is embedded in our
systems,
our institutions,
and is allowed
to exist,
that has led to this,
and we need to undo those practises and question those practises.
And that means
within education,
within the healthcare system,
uh,
within the legal system.
Everywhere and everyone needs to take responsibility for that.
National government needs to take responsibility for that.
And as I've said,
I've,
I'm seeing areas of good practise,
but I think there's a long way to go.
But I think
it just reinforces for me.
That we need to keep doing this work,
and,
and,
and shout even louder,
to,
to be honest.
Um,
it just,
it gives
more fuel to the fire to do this
work.
And can I ask you,
like,
as a
co-producer,
as a professional,
like,
what
is the result of racism in,
or for the people that you try to serve?
Yeah,
that's another good question.
I think
it
alienates people,
it isolates people.
One of the biggest concerns within healthcare is
that it disengages people from accessing healthcare,
and we know that that's a cause of
poor outcomes for those people in those communities.
Um,
because if people have had.
Experiences of racism from healthcare,
they're not
going to come back and they're not gonna seek help when they need it,
and if we can't
engage with people.
And support them when they need it,
they're much likely to get sicker,
suffer complications,
present at a much later stage,
and have much worse outcomes.
So that's one of my biggest
concerns and motivations with doing the work that I do,
um,
is avoiding that problem.
And,
you know,
and just improving the experiences of people from the global majority using
healthcare.
We want everyone to
be able to have a positive experience,
access the same level and quality of care.
And in some situations,
that means being more aggressive and more proactive with people from
the global majority because we know that they're at higher risk
of certain illnesses.
Um,
and a lot of the work I'm doing at the moment,
I've done over the last couple of years.
I reflect as a GP.
Well,
actually,
I need
to work even harder to
identify
people from the global majority and work with people from the global majority
more so than other communities I work with,
because
they need more support than than my other patients.
So
it's coming to those realisations and.
Trying to really work on that.
And I think
we're only just starting to to realise that in the health system,
um.
And again,
there's there's examples of good practise going on in in different areas,
which I'm looking at with,
um,
various colleagues,
but it's not
widespread and it's not normal practise.
It's not standard practise yet.
So that's something we need to work towards.
And could you tell me like,
what
role do you see our white peers
playing in
um our anti-racism co-production journey?
I think they have a really important role.
I think we need to do this together.
It's not enough for one group.
To be willing
to engage and to be doing it,
and I think that's.
Can feel like what it's like sometimes
um.
I think it's really important,
I mean word allyship gets used a lot,
doesn't it?
And.
I,
I think allship is important,
but I think it's really important
to define what that means
as well.
And,
again,
for it to be meaningful and constructive,
um,
and not just a badge that people can
carry.
Um,
but I think meaningful involvement,
particularly like from the top down,
to have.
Leaders,
so in my institutions,
you know,
directors of integrated care boards,
directors of public health
directors of primary care networks,
and at my university,
heads of faculty,
heads of institute
being signed up.
To this agenda
and having their support and their encouragement is really important,
more vital,
really.
I,
you know,
it,
none of this change can happen without
those people.
And sadly,
more often than not,
those people are
from white backgrounds.
So.
I think it is really important,
but it has to be done in a meaningful way again.
My last question is,
any advice,
top tips for people doing
co-production and particularly applying an anti-racism lens to it?
Yeah,
I think I've touched on a couple of things.
So I think really important
is to never feel like
you know everything
because you don't.
Um,
and to see it as a learning journey,
and just to go into it with a really open mind,
open heart,
and to want to learn from other people and
to be really open to other people's experiences.
And just because you may have had one experience.
To recognise that everyone has their own experience and to be
really open to that and to be open to the learning.
Um,
I think that's one of my
biggest
tips about anti-racism.
And just to,
to,
to be persistent and to know that you're gonna have challenges,
you'll come across people who are really sceptical.
But
to,
to recognise that
how important it is and to try and be persistent and to try.
And drive forward this
um
Agenda to improve the way that we do.
I think we all need to be working towards that.
I don't think anyone
has cracked it or knows
the best way to do it.
I think we're all trying to learn from each other and
work towards it being important.
I think if everyone can kind of share that goal of,
let's do more of this and let's do it better,
that's how we will achieve it in the next 5 years,
and I really hope that we do.
So those would be
some of my tips,
I think.
Thank you.
Do you have any questions for me?
Um,
just like
plans for moving forward and how you're gonna
share this work and what's gonna happen next.
So we have a learning report that's gonna be coming out.
Great.
We'll,
um.
Be working with global majority individuals to develop
more of their co-production,
um,
we,
we that not just in
video
uh spend time
working with global majority individuals
to um.
Craft their co-production skills
and how to do facilitation,
sends a minute,
so it's a really long term commitment for us.
Um,
so I'll drop you an email with what's happening over the next 6 months.
Right,
yeah.
And then
there's
from both co-production collective and from the organisation
that I work for,
there's a commitment
to,
to do this work
to ensure that.
Some of the
outputs or the outcomes
are how do we get white peers to
talk about anti-racism
in,
in
all parts of their co-production whilst developing
more facilitators and co-producers from majority backgrounds.
Um,
and.
Every time we have a conversation,
someone's suggesting something new,
so we
develop and add
um ideas,
so anything
that comes from this will include and I'll be in touch.
Yeah.
Yeah,
that sounds brilliant.
I mean,
that,
I think you guys.
Both at People's Voice and co-production Collective,
you're,
you are the leaders in this,
um,
and you're doing such brilliant work and it is,
it is about,
and I should have said this with my top tips.
It is,
it is about getting more people trained and involved as facilitators,
cos it shouldn't
be me all the time.
And that is something I'm trying to do as well.
And I think that's something that
we need everyone to recognise.
So,
yeah,
the more we can do that,
the better.
And it is,
it's a long-term picture,
like you said.
So,
yeah,
I'm really excited to follow your work.
And
if I can help share,
please let me know.
Um,
uh,
there's various people that I've worked with
at the Department of Health,
and the,
the public health directors and local authorities who are really
Engaged with this work.
So if I can share anything with them,
I think they'd be really interested
because they don't know what they're doing
really.
We're developing sort of like a storytelling,
um,
toolkit as well.
How to use racialized stories,
um,
as agents of change around racism.
So,
yeah,
definitely we'll be in touch.
Yeah,
please do.
Um,
and likewise,
I've been doing a project at UCL,
much smaller scale,
but
about anti-racism and public involvement in research with UCLH actually.
So I'm about to produce
some.
Tips,
if they are tips.
Just my experience and my reflections from doing that work
with UCLH,
so I'd love to share that with you as well if,
if that's OK.
So,
uh,
so what you,
we could do is if you shared them,
we could do a joint blog.
Yeah,
that would be great.
The co-production collective and
um
we can put them on PVM's website,
and we can share that.
But we could actually look at them,
maybe bring a group together to look at them and
kind of embed them in some of this work as well,
cos what
we want is
not everybody to do the silo bits,
so learning together.
Exactly,
yeah,
it would be really nice to bring all of that together.
And I know,
so I work with patients at UCLA.
She's the public engagement manager.
You might know her already.
I,
I think she'd be really interested in this as well.
So we could bring it together.
Yeah,
that's great.
Yeah,
I think we've met before,
um,
yeah.
In Newham,
I think,
um,
I wanna say around the Bromley by Bay Centre.
um.
Yeah,
they're really active,
aren't they?
She's very involved in various community groups as well.
She tries to,
to bring them into the research at UCLH and they've just
opened.
I can't,
it's got a long name,
but it's like the centre for Research Involvement or something,
which is the the sole aim is to increase representation from the majority.
So they'd be really interested as well.
Definitely.
And,
and that's part of our work,
so,
uh,
I will email you separately.
Yes.
Are you happy to stop recording there?
Yeah,
yeah,
absolutely.
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