In the session today, I have,
basically brought up the themes, and one is kind of,
identify the range of communities, publics
and engagement approaches.
Some of the practical and ethical
implications of what communities
and also consider some of the areas
that we need to think about when we
are planning and implementing community
and public engagement strategies.
And we'll start with a brief feedback.
I already received the feedback, so I'll summarize
some of the areas that were coming, in that
feedback.
There are four areas that I hope to cover within this
session.
One is very briefly touch on why engagement in
health
research is important.
And then, a little bit of the,
deep dive into, the different ways
in which communities can be engaged
and the goals for those engagements.
But again, contextualizing these
because engagement is very context
specific.
So paying attention to the context.
And then I'll talk a little bit about representation
and some thoughts on some of the limits of
engagement.
A lot of work that I'm going to draw on
is, colleagues that have been working
in the field of white men for many years.
So I'd really like to recognize that
and draw heavily on the institution
where I'm based.
The camera work, plus research program
that has been,
implementing engagement as implementing or
undertaking a government for many years.
And so a lot of my experience
will be drawn on that, but also informed by other
contexts
in which we have work and colleagues
that, from different settings.
So wide engagement.
What sounds,
counter-intuitive because you've just come from a session
where
what's been discussed, why engagement in both research
matters
and you reflect on the video, that was shared earlier
and I hope you all managed to view
it is, around 15, 11 minutes.
Video.
And you colleagues Datacom video.
This is a video that was taken.
It's a very, if you look at the map,
it's really very early.
People I researchers just thinking,
how do we bring the community voice
into the research institution?
So, it's not like, experts who took the video
and it is of community members, representatives or community
members
in their home environment having a conversation about what
they thought the work of the camera
contrast research program was,
and their views about how
that work has had impact on their lives.
This was 2005.
A background for that.
At the time of taking this video.
The program had been in the coastal part
of Kenya for the last 15 years.
Throughout, for every reset that were
undertaking.
There was careful consideration or talk with the community
leaders
to get ideas of how to get to communities.
Often that involved communities.
So as far as researchers were concerned,
they thought they were doing a pretty good job with a gated
community.
But this video was really powerful in
showing that perhaps they were engaging,
but were not really listening, to the views from the community.
Or they were doing engagement as researchers wanted.
The goals were more for them rather
than what the communities really expected.
So I had a couple questions,
accompanying
the video, and one of it was attention
was, from the community,
that were, that were coming from the video,
from listening to the video and how engagement might have
seen
the community in this context and how it might assist
researchers or even research institutions
in this context.
Like I said, Holly very,
graciously sends to me the feedback,
and I'm very happy to see that
many of you all talked of very similar thing and very
briefly,
just about some of the things that we,
I imagine,
listening through, to hear many rumors, that
that community members had about research,
about the work of the program.
And often these were linked with things
like symbols like this logo,
versus research procedures, like the amount of blood,
the follow up in homes, the motorbikes, the vehicles,
and the vision or the view of research.
How they saw the research institution is is
very,
very well resourced institution
and ranking where all the money comes from.
So there was a lot that was linked to my,
there was this an appreciation.
And sometimes, I would say of appreciation
for the work of the institution of Cambridge.
It was often been described as a health care provider.
And very rarely was it been discussed
as a health research institute.
And they really valued the expertise.
I think sometimes they even exaggerated
how much, a disease.
But it has decreased as a result of the work of the institution.
I think exaggerated because obviously we know
that was not the case when we looked at the numbers
and the mortality and morbidity cases
that were coming in.
So when they talk
about 95% reduction in malaria, we know that was not always the
truth,
but that's how they viewed it.
We talked about the differences in terms of the level
and quality of care that is been provided
by the Public Health Ministry
when compared with when they are received
by what we call the country doctors,
and also what was in that many things.
But also what was emergent.
Interesting for us is to recognize
that even our own staff didn't
seem to understand what the institution
does, and were also contributing
for the misinformation and the rumors that were
circulating.
Now, looking at the responses on how it gets,
in these communities, some of the things were about
clarity
about what what research is, what the institution is about,
what the program is all about, clarity
about these procedures that form,
the roles of different stakeholders.
And what role did they play?
So when you've got doctors in the ward,
communities may not
always understand when it is research
and when it is clinical care.
So understanding the roles and what each stakeholder is
doing
would perhaps help clarify some of the areas.
The other area that your judgment would help
was articulate, provide an opportunity
for communities to try to collect
their needs and their priorities and see
whether or how this could be taken up,
but either the research institution or
by other stakeholders who do provide those
services and then perhaps contributed
trauma
against community about health priority
health needs of themselves
and to support health research and what role it plays,
what came out as some of the ways
in which a judgment skin
perceived to be such as institutions
is, it could help, research
institutions, find better ways to interact
and inform community.
And perhaps, in so doing, open themselves up
to being part of the community rather than community as a
researcher.
So these, come together as a community of research
that in encompasses both researchers and
communities.
If I get comment with communities
and participants to address issues around
specific research questions, but what about the institution
itself?
I talked about the importance of also considering staff
engagement,
not simply community, but, the stuff
that I interacted that we work with.
Those are real.
Valued gatekeepers in the community.
Information that they share is taken
very seriously, and it is highly valued.
So therefore, having a program of work
around tough judgment
and then, of course, thinking about long
term investment in engagement,
not simply as a one off event that is going to be undertaken
for a year.
And everything is is all settled
by thinking carefully about a program of work,
including
ensuring these appropriate skills
for judgment.
I pause in case there's any question.
Please do we?
I know there are many things that you learned from that
video.
So that is a background to why we then,
decided to
to come up with a judgment positive
for the program.
And that's a quick recap.
It's not just us, but really globally, community engagement
is promoted
and many funders, institutions have developed,
fundings teams, there website
that are dedicated to community and public engagement.
There's a lot of material out on how you can engage.
You can engage what to think about engagement.
And so what I'm going to be doing
the next few, slides is simply summarizing
some of the information that is already, quite,
clear, accessible.
And one way of how we think about community
and public engagement in areas that are always contested.
One is obvious.
Why do we need to gauge?
And I think now this is a moot point.
Moot point.
But, many years ago, that used to be,
quite of some conversation.
And then these, of course, questions
about whom do you engage?
Because communities are different.
What is a community when it comes to
representativeness?
There are questions about that.
And then how do you engage.
And oftentimes you know, that a catchment is
implemented
pragmatically, often is not very careful
thinking.
Often people encounter problems in the field
when they are collecting the data,
when they are recruiting a participants,
and perhaps only then they think these are steps we.
We need to have a community.
And we are hoping that through these,
conversations,
we can challenge that and say that engagement needs to be very
much
an integral part of the entire research system.
So why engage communities?
Often to both, you know, to talk about that
many.
But, at a broader level, you can,
you can group them to broad categories,
these
what we call intrinsic value obligation
that it is about is the right thing to do.
Even if it didn't contribute to anything, instrumental like
anything
like increment in terms of recruitment
or acceptance of you.
So the fact that you are in a position
and I talk about you as a researcher
in this instance, but a component
is that sometimes research has to come
from the very community where research is being
conducted.
Sometimes we might where the research,
but too much and forget that it is important to engage
the very populations that we are involve in our
research.
So the engagement itself is a good thing.
It's part of being
you might as part of explaining yourself
to whoever you're interacting with.
And then this instrumental value and the instrumental value, the
easiest,
I think, for many researchers to,
to figure it out,
and often is because a, that is a need to undertake a
research
project ethically and therefore consider the acceptability of
the research
procedures, information that could perhaps
feed into the research design and so on.
Consent processes, considering what would be the processes
that would be appropriate to contexts,
but also in health policy and practice.
It also comes up in terms of making sure
that, when policies are being,
formulated, we are
taking account of community views, that,
healthcare providers, research as well.
What in health policy systems research,
the respective for the are responsive
if they are considering health systems
and how to be equitable.
We are considering patient satisfaction
and so on and focus in the next
few slides.
Not so much on health care, but on health research.
Other thing, and this I think also came
in the previous session, is how then what is a community?
And then many
publications on what communities are
and how they might be defined.
Generally.
It is an agreement that community could be
based on where somebody lives,
a geography or which could be inserted by
goals.
It could be by shared experiences,
it could be by disease, by conditions.
And so, the something that is bringing
only people together
into a common area and that is what forms
community.
And these communities could be quite,
the bonds between them could be quite strong or could be very
loose.
They could just come together for a specific function.
And then after everybody goes on their own lives,
or they it could be bounded for long periods of time.
So whenever we think about membership
in the community,
some of which could be by choice,
and often you hear of especially social
groups,
it could be based on income settings,
it could be based on conditions and so on.
But also at the, characteristics that are linked to these.
It could be by age, ethnicity, illness
and so on.
So these are very loose ways of defining community.
And the reason why this is important
is because we always need to reflect.
Whenever you talk about community,
to whom are you referring to?
Because
individuals belong to many different
communities and even for yourself.
If you thought for a moment how many groupings
you call yourself a member, you might find
there are so many,
and that give some kind of check.
When we think of communities, it's
not just one amorphous grouping, even
geographically,
but that the individuals might not always see themselves
as have been defined by others in that community.
So when researchers go and define
a community, individuals who are been
put in that definition of community
might not necessarily see themselves
as part of that community.
It's always important to take note of that.
So accepting this fuzziness
on what a community engagement is
and how do we go ahead and engage
with the communities, let's talk about is not clear
cut.
How do
people engage with them and who speaks on behalf
or represents communities?
But before we do that,
I think we need to reflect a little bit on
what is engagements.
And United Nations and many other
documents have defined what is engagement.
In do and document is it is strategic process
of involving local populations
in all aspects of decision making and implementation, that
it's
one of the broadest definitions of what
you can think of community engagement.
There are other publications that have also further defined
and differentiated between community
and public engagement.
In common, we say
we define public engagement is a process
that provides people with trust
what information and key policy decisions
and receive
their input and integrate it into decision
making and social action,
and then further
distinguish it from community engagement
and say that community engagement
focuses on specific communities involved
in particular research or activities.
I think sometimes it's good
to differentiate these because the mechanisms for how
to mitigate
people, and public food differ.
But what does exactement mean?
From the definition that you see here,
they may not specifically be how you might engage.
And that is where a host from all approaches
of a catchment and comes to form.
And so we say it is a spectrum of ways
of involving or working with each other.
And it can range from information sharing,
from creating awareness
to deeper levels of consultations
to active participation, decision making,
to being involved in the actual implementation of the research.
Nowadays you hear a lot about co-opting
community members into research to be part of the research team.
So there's a whole level of engagement,
full spectrum over settlement.
And so it is not one thing I think this is
really important to think of engagement
as a spectrum of things that needs to be done in all of
them.
We need to consider the setting,
which is the catchment about, and where is it going to be
based?
Is it about activities in a health facility?
Is it about how households ought to be involved in health
research?
Is it about schools?
There's a whole lot of areas.
Also, we need to consider how much
information,
what is the content of big and powerful?
What are the approaches that would suit
the content of the engagement,
which also leads to how much interaction
and the power sharing
is required for the level of engagement
that is needed.
And that's a little bit in the next few slides.
So in thinking about
sample complicated, there are three main areas
that, would take you through the next
few slides.
The first one is a good and a quick
reflection of the previous slide that I talked about the goals
and the approaches and activities
that might meet those goals.
That is, how do you engage and then whom do you engage?
You bring the researcher and then a little bit not, but a
presentation.
So how do we educate the community,
the public
again, remember the good,
the intrinsic and instrumental that.
So it is always really important to have an idea of what you
why do you want to get.
It's touching points because that might determine
whom.
Then you need to engage and how.
Then you need to gauge and therefore the depth of that
action.
And as we are thinking
about this, we normally talk about
a whole spectrum of engagement,
from wide engagement to narrow
and deeper catchment, where why that government is
about getting
the greatest outreach, information
going up.
As many people as possible.
It is therefore likely
to be less participatory,
perhaps less opportunities for direct feedback.
And it often tends to be about raising awareness about your
research,
about the institution, about an activity,
or about health, anything.
So it is likely to reach
as many people as possible, but perhaps with very little
minimum,
either one on one or live or interaction
or feedback loops.
And then it can range all the way to more directed
outreach where it is more participative.
You're getting direct feedback.
Perhaps there's,
several iterations of feedback
and there's opportunities for mutual learning.
And always it's important for us, to,
remember that your judgment is moving
beyond this depth to the brain of reach.
It's not enough simply to reach for the mass,
but also consider,
the value of their judgment, how much feedback you are
getting
and how much you are learning, and perhaps
changing a lot of your research
policies, activities, what you do as a result of
these,
engagement?
Often times not always.
It's advisable to do some formative research,
if that can inform on,
judgment strategy, think about what the goals are,
what activities will take you to where
and how about what?
We found it very useful data.
Video was part of our formative work,
and we have since this was way back in 2000, we
published
quite a lot on what we are doing then
and in setting up the catchment.
And generally there was positive descriptions of Cambridge from
that video
and little understanding of reason,
and that really helped us figure out
several things. One is
not simply
creating a program where we educate people
because we knew that was,
a knowledge deficit model, which doesn't go far,
but rather think about how we are interacting with the
communities
and whether we are part of community
or we are being seen as separate
for community and create of, opportunities and fora
where we become part of the community
and even as a part of the community
that accompanies that, I would, number,
I think of,
60% of our staff come from within the community.
But the moment,
they are employed by the institution,
there's a difference in how
they are viewed by the community and also how they view the
community.
So some of the goals of commitment
and what I'll be doing next, slide talk about at home
and then suggest some of the populations
or communities that could be considered
and some of the activities and what that is, is why does it
so some
of the goals of engagement could be about creating
awareness,
about a program, about a research study
about institutional.
It's purely providing information,
for populations.
And so, the target
or the community could be the general community
or the population where you would be recruiting.
The participants from or the public,
depending on,
what the messages
and the activities again, vary
according to geo geographic zones.
I'm sure the activities that would be done in U.S,
that would be done in Europe, that would be done
even in some parts of Africa would be quite different.
These are just some of the things
that people might consider,
having public meetings in community
where that is really appreciated,
having, town hall meetings where that is really appreciated
in many of our communities will be a place
they really value coming to that we call them borough.
That's coming together and having a day
where, researchers present their work,
healthcare, staff come and talk about health,
you know, health information, that
administratively does come and talk about,
government policies and so on.
So that is a normal practice that is done in the community.
And researchers could build on that to talk about specific
research
areas or specific programs of work
prep your program open days up and days
is where communities could come to the
research institution and open up the door
so that they get to know what happens in
research.
Exhibitions are also quite,
common.
We have what we call a magnet theater.
It's well published.
Please read on it.
It's a very attractive way of putting,
clubs together.
And they they contribute to their
conversations.
What we found really useful is to have
very simple, clear messages, not too much information.
So if you want to speak about a specific study,
you cannot go in as much detail as you often do when you're
giving.
Consider when you are seeking closing.
What we found and we've documented
these is very simple.
Clearly cities that to emphasize too much information, people
zone in and out of, you know, the activity
and the conversation.
And so these, linking of information
and sometimes that can be understood
quite differently from what you initially
intended.
And because there is very minimal,
opportunity for interaction, there's less one on one
interactions.
We call this part of the wider engagement.
And then you might, we want you to seek support
from important, community leaders,
committed gatekeepers for research.
That program of work.
And then you have to think carefully
who are the gatekeepers,
who are whose opinions matter on whether or not,
my work will be accepted, whose views would
perhaps influence whether or not communities
accept me.
Because it's the government.
Process of entering into our community.
In our case,
we have provincial administration
who are very, key gatekeepers.
They also have, groups and committees
that they meet with.
If it is within a hospital set up,
you might want to consider took you to the Minister of
Health to,
if your project involves policymakers,
you might want to consider, talking to them.
Right from
national level, all the way to the local
level.
We have special groups, like at the,
primary care level, we have what we call
dispensary committees.
And these are really the gatekeepers
for any activities that are happening.
They promote accountable.
And so those would be important, gatekeepers often activities
would involve
a lot of meetings, workshops, reports,
emails, conversations, calls and so on.
This is likely to be deeper, but depends very much on the
extent
to which their decision has got an influence on the
activity.
There are things that you cannot really continue until you get,
formal.
Formal permission.
And so the get skipping kit can be a little bit tricky
sometimes
when, when you have gotten, approval,
the third floor is where you are actively
seeking opinions, views to feed into your research
project.
And this could be about procedures.
It could be about the research this time.
It could be about how this study
is going to be accepted in the community,
the consent processes.
And here you are likely, therefore, to consider a smaller
group
so you can have deeper conversations.
You can actually get and solicit feedback.
And perhaps you might have repeat meetings.
Either with the,
with the, with the potential population,
if it's own conditions,
you might want to consider patients
or those with lived conditions.
Often it might involve participatory
activities,
depending on how much feedback you are soliciting.
And sometimes it might consider
that you might consider deliberative consultations or
engagements
where you want decision points to be made on whether to proceed
or not.
This obviously will have a deeper level of
engagement.
It can range from moderate, to deeper.
And what I provide there is an example of some of
the ways
in which we are doing this.
These are groups that we work with
very closely called the company
communities representatives that are elected by community
members.
And we work with them.
Well, we need deeper input about specific studies.
Well, we are actively, soliciting feedback on our
procedures.
The reason why this is the case is because the they would have
had an exposure of what health research
is.
They perhaps have got a better understanding of what,
research procedures and health care,
clinical care or clinical procedures,
and therefore could advise
on what might be appropriate and what might not be
appropriate.
Again, all the time we need to consider
diversity and inclusivity
and that we are not only engaging those
who are leaders, but also, seeking, those
might otherwise not have the opportunity
to contribute to their discussions.
These are far too reach for those
who could be marginalized
by one reason or the other.
And then these, these
we I put it because sometimes we can get
feedback,
and not consider
one, providing an account of how that feedback
has transformed the research that which you are consulting
about.
And, and nowadays,
many funders are making it a requirement
that the like to see
how your project has been transformed is a result of
engagement.
And they would like to see how you inform the communities
the changes that have happened as a result of the engagement.
So this is one way of really being proactive in making sure
that we are paying attention to community voices and views,
and we are taking them on board, and we are transforming the work
that we are doing.
And often these would involve smaller groups of people.
When we are listening and wanting to provide feedback,
sometimes it could be even with
initial consultations we've
got with with research staff who are coming from the
community,
who could provide early feedback
before you then proceed to, to engage
with the community.
I found it very useful, especially if,
the topic of conversation one is complex to
is very morally, socially, ethically complex.
And you want to start getting ideas of
how might community receive my research?
What are some of the areas I need to be aware of?
How do I,
frame some questions that I want to ask?
What are sensitive words that I cannot use in the
community?
Sometimes you might want to talk to people
who workers who are excluded
from the population, community engagement
staff who do have a deep understanding
about that, or even previous research
participants who are featured in studies
because they have a
and some understanding of what is involved in research
and so on.
Often this is quite in-depth.
Investment.
And we should always be careful when it comes to feedback
of research results that by filling back,
while it is desirable and ethically appropriate that
we are not inadvertently also exposing
those who participated in research.
So when we found it,
when people, for example, some of the research on HIV,
on HIV research, we found and,
and more recently on mental health,
we found that we have to be very careful
what kind of information goes to the participants and
what kind
of feedback goes to the general population
where the participants improve.
And so we need to be very careful
where there is feedback
that we are not inadvertently exposing
others.
And finally, this is the last group
that I'm talking about.
It's a lot of attention on co-production of research.
But what does that look like?
And is, research produced and,
examples of where co-production could be considered is where,
these direct implication of the research
to the participants.
It often involves and, and participatory
approaches,
including community based better approaches, option
research,
some of the ways in which communities can be more
actively be involved in the research
ecosystem.
These are
array of community based approaches.
You can read up on them the key features,
that are usually the subject
or the subject of research, become active
researcher and agents of change
and then involved in developing, implementing,
reflecting as part of the research
and knowledge innovation process.
So they are part of the team.
They are still, not researchers but see or they could be
researchers.
But the bring in and the the part of
they bring the views of the community
and be a part of the change that is likely to be happening.
And some documentation is coming through this a more
that we can learn from, the NGO world when it comes to
development
on how communities can be involved
in change processes.
We have this participatory approach.
This we call it the highest level of engagement,
because the sharing of roles of responsibilities and of
deliverables,
depending on how it is set up, which could be very empowering.
It could
lead to communities taking up change
and implementing and influencing
relevant policies and changes that need to be done.
That is one of the case books that I've shown here
on participatory action research and health, systems.
And it's got an array of methods that one could, drop.
I suppose you could say
just had numbers of private gateman calls at bingo,
but perhaps there are many more that you could think of.
And feel free to add that.
So let's
in the next few slides and talk a little bit about
power sharing.
And again,
we see engagement must be more than a one way.
It must be more than simply speaking to people.
It has to have mutuality need
of learning, of listening or feedback.
It's not enough to simply collect
information and go.
And nobody knows what you do. That,
this ladder of
citizen participation is widely used in engagement to get a
critique
of what is happening with engagement
and where we are at,
recognizing that it was developed
many years ago, decades ago,
within a very specific context on social projects.
But still quite applicable to research
and to many other disciplines.
And within it's, unstable.
But the levels of our judgment information,
which is widely relation in which,
this is in the context of social projects,
and about governments delivering information for use
by citizen
consultation, which tends to be two way
and active participation,
which is based on partnership
and which citizens actively engage
in the policymaking process
and the commons is the role of of citizens
in proposing
policy options and shaping the policy dialog.
You could change this due to research.
And like I said, Colin, provided a nice typology.
Gennaro also provided a nice typology
of public engagement mechanisms to serve some purpose that you
could read.
Matthew, what I think is happening
within other research and the five goals, just talk
about,
we need to be very careful at the lower ladder.
Our catchment is not about therapy
and manipulation.
And they do describe what that happened
in many condition.
Is that about but that
region in that at some point at the lowest level,
all that we are doing is informing,
but then we can go all the way up.
What I've realized so far, most of our investment
activities
hardly ever get dedicated public citizen control.
Many of them end up at partnership.
These potential, for example, for community based certain
research
to lead up to delegated power, citizen control.
Perhaps there's some examples of that.
If there are not that many in research,
there are many in development, not so much in health research.
That is something perhaps to improve.
And the current focus on co-production of research,
perhaps, is aiming to shift the power dynamics.
There are some arguments on whether
that is a good thing or a bad thing.
These are middle ground.
I think many of us, advocate for more middle ground.
And what I've
just listed there is some of the ways
in which,
a summary of what I've just talked about,
going through all the segment approaches
and the goals.
But what becomes very clear is that it's
not it's not likely
to be that it is one engagement activity
that covers all areas.
Instead,
many times you'll end up engaging
multiple communities using different approaches.
You might have various goals for each of those.
And so engagement is not one thing.
That is all.
Can you need to consider all these multiple areas
that can define what you are doing.
You engage when someone says, I'm
getting communities, I never understand
thanks to this.
But when you say I'm engaged, but this is
what I'm doing, this is why I'm doing it.
This is, am I getting it?
In fact, makes a better understanding
of what exactly?
But you're getting communities and stakeholders
in in our program,
we have had a whole, array of activities
that we do.
No engagement.
We are getting communities, we are getting schools.
We are getting all staff, stakeholders, policymakers,
media.
There's a whole array of engagement
that are going on at the same time.
And in all of them, we try to think,
why are we engaging this group?
What is the end product?
And the goals really help us,
figure out who is it actually including?
Who are the immediate people
we need to include, who are tools
that would wish to include.
But perhaps limitation of resources
might not allow.
Over time, it becomes a very useful way
of mapping legitimate strategy.
And in order to compromise,
relationship building is absolutely
important.
We aim to achieve all we aim for equity.
But we do recognize these, obviously not very easy.
And the equity could be in terms of representation.
Equity could also be in terms of the freedom by which people
feel free
to want to voice their opinions,
and they are listened and attended to.
But that is an engagement.
Oftentimes we end up not being able to
engage
everybody in the community where we are
based in Kilifi, our catchment area
of communities, 300,000 people, there's
no way we could ever reach all of them
within one time.
And so we have to think about community
representatives.
That is those whom we need to,
to engage with more regularly and in thinking about
representation.
These, we, we think about those who speak
on behalf of our community
or those
that we are we think they are
representative
because they have very similar characteristics to the
community.
And therefore, the views they bring are likely to be
those
that we are likely to get from the community.
I have no,
inference for either you,
anyone doing a judgment and wanting to involve
representatives
have got to work out what is appropriate for them
or what is appropriate for that community.
In our case, a quick reflection on our past
history.
We initially elected black to the community leaders
thinking tools would be to speak on behalf of community, and
therefore
they would be accepted in the community,
and therefore,
they could give us a community opinion.
When we went back and did an evaluation of that
process,
it was completely rejected.
We were told as much.
If these people, the community leaders,
these are very specific functions,
why they are leaders.
But when it comes to research, we need to think of another
mechanism
and therefore our mechanism of electing
community, of of community leaders
being elected by the community came
from the views, by the commits themselves.
Not many
people will have resources the time to do that.
But you need to be aware, whichever way of representation,
you need to be aware of some of the considerations that you need
to have.
Council who is selecting whose voices,
represented, the most vulnerable.
However, you're defining who's had the least vocal
and what approaches are you making for
those that don't even speak at all,
don't come for meetings at all, or don't have a voice?
Their views.
What extra measures need to be in place?
Also clarity of roles and responsibilities
and what is expected?
A balance of individual motivation
and fair composition.
There's an attraction to be involved in this,
composition.
Been in provided.
And that is a good thing, but also need to be aware
of the dynamics that that can cause
and how this is discussed.
Some of the challenges related to
information
and resource asymmetries with the stuff that are getting
and whether such as themselves can pull some challenges.
And then, of course, for rich and marginalized populations,
how are they
represented and engaged and building
lasting relationships over time?
And we talk about when founded a trust,
not simply brand. So.
So I am now moving through
challenges, some of the challenges
and limits of engagement.
One is there are always tensions
between providing health care and successful research.
We need to be aware of this,
permission from community leaders
to undertake research
and community consent is not the same
as individual consent and so on.
At each one of these, there are always tension
and I think in the previous session
you already started
talking about some of these tensions,
so I'm not going too much into them.
We need to be cognizant of the context,
you know, working within health systems.
We might be working within systems.
So community input data is not valued or
essential.
So we need to figure out which systems
we are working on and how best
we can enhance the judgment that ought to be
taking place
also within communities.
Awareness of rights and response.
What I've talked about representation.
We also need to be aware of the wider
social, political and cultural environment
in which we are operating in some of the, settings where
we go out,
you might find that women and men
do not interact at all,
so your judgment activities need to take account of that.
It might require that, your,
organizing engagement activities
and different days at different times
or in different venues,
depending on the context and the cultural issues around
it.
Also, who speaks in meetings matters.
So what else does engagement can we do to enhance the voices
of those
that are not able to speak because of cultural, but,
there's
some limits of engagement and your rights
to speak for some of these.
And then the last thing to say is that it may not resolve all
historical
injustices, and inequities.
So those are some of the limits of engagement.