Dr. Kim Ozano: Hello listeners and welcome to Connecting Citizens to Science,

a podcast where we discuss current research and debates in global health.

I'm your host, Dr. Kim Ozano, and once again, we're on location in Liverpool at

the three-year PACTS Partners meeting.

In this episode, produced in partnership with the Centre for Capacity

Research at the Liverpool School of Tropical Medicine, we explore how

research capacity strengthening goes beyond researchers and clinicians.

From journalists and programme managers to community leaders,

teachers and caregivers, everyone has a role to play in improving health

outcomes when they're equipped with the knowledge and tools to do so.

You'll hear how the PACTS programme, which is focused on patient's

centred sickle cell disease management in Sub-Saharan Africa has

embedded a more inclusive cyclical approach to capacity-strengthening.

You'll also hear how journalists and researchers are learning to

collaborate from the start, and how community-led conversations

are helping to tackle stigma.

We even discuss how accurate information shared with patients' families can be a

powerful form of capacity strengthening in itself when it's situated in the

right environment of the project.

Joining me are three expert guests who bring their different perspectives

on what it means to strengthen capacity for lasting change.

We're joined by Dr. Motto Nganda, who is a medical professional and public

health expert with experience across the Global South in co-producing

and scaling up person-centred care through participatory research.

Within PACTS, he coordinates implementation research across all sites.

We are also joined by Bernard Appiah, who is a pharmacist, a

journalist and assistant professor at Syracuse University, and the

Director of the Center for Science and Health Communication in Ghana.

He leads the media and health communication elements of PACTS,

exploring how journalists and researchers can collaborate more

effectively across the life of a project.

Finally, we're joined by Reuben Chianumba, who is a programme manager for PACTS

in Nigeria, and brings practical insights into stakeholder engagement,

community mobilisation, and the logistics of turning strategy into reality.

So let's find out how bringing the right people together at

the right time can make research capacity-strengthening more inclusive,

more sustainable, and more impactful.

So, it's great to have you with us.

And I think today we're gonna understand a bit more about capacity-strengthening

across not just researchers, not just clinicians, but wider than that as well.

Motto, perhaps you could tell us briefly about the PACTS programme and sickle

cell, so we can situate our conversation.

Yes.

PACTS, actually means Patient-centred Sickle Cell Disease Management

in Sub-Saharan Africa.

It is a multi-country project that looks at patient-centredness in

delivering care or management for people living with sickle cell disease.

Patient-centredness means taking into consideration the beliefs, the values,

and the needs of the people affected and involving them fully in the decisions

and processes around their care.

Sickle cell disease is actually a hereditary disease, so it's gotten from

the parents and transmitted down to the children, and it's a disease that affects

quite a lot of people in the world right now, a lot more in Sub-Saharan Africa.

And PACTS works in three main countries in Zambia, in Ghana and in Nigeria.

But the consortium is made up of more countries including, institutions

in the UK, like the Liverpool School of Tropical Medicine and

the Syracuse University in the USA.

Dr. Kim Ozano: Fantastic.

And I understand that the PACTS programme has been really passionate

about capacity-strengthening across multiple stakeholders.

So, each of you have a different focus around capacity-strengthening,

and Bernard, you are the media lead for the programme.

I think we think about capacity- strengthening a lot with researchers,

and we've heard from clinicians, tell us about the media capacity-strengthening

and why it's needed.

When it comes to media, when you are working with journalists,

particularly those in countries often do not have graduate degrees in science

journalism, you have specialists who will be reporting on science and health issues.

If these people are going to be the ones reporting on sickle cell disease,

we have to build their capacity to be able to report adequately on the

disease, but also not only journalists, even of course, researchers do not have

the capacity to do media interviews.

So, we have to build their capacity so that they will be able to do media

interviews, but also even beyond that, they could even write opinions.

They can easily interact with journalists.

So, there is an aspect of PACTS which bring journalists

and researchers together.

It is one of a few projects where you will find journalists and researchers

under one roof being trained to be able to interact with each other effectively.

Dr. Kim Ozano: That's amazing to have that embedded within the programme as well.

Motto.

As a researcher, how has that been for you?

It's been really amazing.

I haven't had an episode where I sit down with journalists to do that, but I have

seen the output of what is coming from Bernard's work on engaging researchers

and journalists to be able to discuss the content on what is going out there

for sickle cell disease, and I think it's really fantastic because journalists,

I believe, do know how to approach the people and how to share that information,

but researchers have the knowledge on what is really very necessary.

So, combining that together between knowing what is necessary and how

to do that is really fantastic.

I think it's really a good plus for the project.

Dr. Kim Ozano: Okay.

And then you also have a capacity-strengthening

role within the programme.

Tell us a bit more about that.

Yes, we know that managing sickle cell disease

is very multidisciplinary.

And if we also want to do it in a people or patient-centred way, we

have to involve everyone that is involved in the needs of that patient.

And capacity-strengthening involves both clinical and

nonclinical capacity-strengthening.

So, clinical is focused on healthcare professionals, that includes doctors and

nurses on the clinical and hospital based management of sickle cell disease itself,

but also on social aspects of management of sickle cell disease, which involves

things like patient reception, patient times, how to manage stress associated

with sickle cell disease, things like addressing stigma and all of that.

So, all of that capacity is really very essential for people engaged

in the management process of people living with sickle cell disease.

And that goes for both the clinical and the nonclinical people because if

we look at, say for example, community stakeholders or community members,

including people who care for people living with sickle cell disease, for

example, their parents or siblings, they need to understand the disease.

They need to understand the manifestations of the disease so

they can be able to understand what the person is going through to be

able to support them adequately.

This also extends to other community stakeholders, like teachers in schools,

religious leaders in religious settings where people need to understand what

is happening to these individuals.

So, they're able to put in measures and structures in place to be able

to support these individuals to strive in their best of abilities.

Dr. Kim Ozano: I'm really getting the picture for the whole systematic approach.

It's starting to link up all the different elements right up to dissemination.

So, bringing in our, our last guest here, project management.

Tell me about capacity-strengthening in your role.

Yes.

My name is Reuben Chianumba.

I'm the programme manager for the PACTS programme in Nigeria.

We focus on making sure that we have the right people, we have the traditional

chiefs, we have the government policymakers, we have the hospital

management, community leaders, religious leaders, people who influence policies

in sickle cell disease, we bring them together to ensure that they have the

right knowledge, they have the right skill, and they have the right capacity

to make sure that the programme makes a lot of impact to the community.

Dr. Kim Ozano: So, from a practical perspective, is that like a capacity

assessment that you start with?

Yes.

We check what the baseline is, what you know, and then we now

build on what you already know.

So yeah, we start from the point of know, and then we build to

where we want you to get to.

Yes.

Do you have the skills to counsel children as a teacher?

Do you have the skills to educate people who want to get married

about sickle cell disease?

Do you understand what it means as a caregiver, a patient who has

pain, what their pain score is?

Can you assess what kind of care the patient needs, those kind of

capacities can be built both as a caregiver, as a stakeholder, as a

healthcare provider or as a policymaker.

Yeah.

Dr. Kim Ozano: So, all of the stakeholders have a capacity assessment

as a starting point, is that right?

Yeah.

And just to add a point to that, so when you look at, if you bring

journalists and researchers together, we know of a very important health

communication research methodology, which is called content analysis.

Dr. Kim Ozano: Mm.

And that kind of approach is used by communication scholars to

look at the extent to which a particular health topic has been covered over time,

but researchers who are in the health side, some of them usually don't even

know how to do it, but journalists are also interested in knowing how to do it.

By assessment, we got to know that both have expressed a

need for training in that.

Dr. Kim Ozano: Mm-hmm.

And then because of the assessment, we had to

organise workshop to train them.

So, assessment is always very important before you actually build capacity.

Yeah.

Dr. Kim Ozano: So, you do your capacity assessment, you understand

what the gaps are, and then how do you decide on the content?

I guess there's quite a lot of need across all the stakeholders.

Is there a priority process?

Yes.

Often there is a priority process.

Now it depends on which of the target audience or target population

we are trying to capacitate.

Whether it's clinical or it's at a community, or it's with journalists and

others, we do carry out prioritising techniques or methods that we prioritise

what we think that is most needed at that time for that particular set of persons

who need that capacity-strengthening.

So, we do carry out prioritisation.

One important testimony I want to say here is what

PACTS has been able to do, they have been able to help us to go into the

communities, to be able to talk to our religious leaders, our traditional

leaders, and our community leaders, that this is an important project.

We need to bring these patients back to care.

We have a problem of loss to follow up.

So, we've been able through the PACTS project to be able to go back into

the community to tell these patients that we have a programme that can

help you be integrated back into care, help you manage your sickle

cell disease problem and support you all the way in managing that crisis.

The community leaders were able to say reach out to our people.

They're able to give us the resources, give us the floor, and give us

the community members to talk to.

And this has built impact.

Dr. Kim Ozano: So, Bernard, that's got me thinking, the content analysis with

the media that's out there, does it give you an idea of the kind of knowledge

and awareness within the community and how sickle cell is being talked about so

that programmes can shape their language?

Yes.

Typically, with media content analysis, you will have to

select a particular media.

If you have a lot of resources, you can decide to do all of the

media, but in general, you have to do also something meaningful

within a shorter time, if possible.

So, for the purpose of PACTS we focused on newspapers across Africa

and how they have reported on sickle cell disease over the years.

And so, we identified some gaps, for example, to what extent have

they been citing researchers?

If researchers have been publishing in journals and the articles are not being

cited by journalists that shows that the researchers are not reaching out to

the journalist, or if the journalists are not citing more patients, it

means the voices of patients are not being heard in these kind of articles.

And we also know that articles that get published in newspapers, some

of them end up also being discussed on radio or even on television.

So, even though we are using only one for now, it has given us an indication

of how media coverage is and the extent of knowledge that is getting from

the media to members of the public because, newspapers are written with

the public in mind, and so if what is there is not adequate, it suggests

that there may be low knowledge on particular sickle cell disease topics.

Dr. Kim Ozano: It's truly fascinating.

I'm really enjoying this conversation and learning so much.

So, that almost brings me back to you Motto around some of the social

aspects that you were talking about.

Does this content analysis also give you a feel for, you talked about

stigma and and how people receive patients, does that end up being and

built into the capacity-strengthening the clinician's area?

It is a very vital component on management of people

living with sickle cell disease.

Because if someone is stigmatised, for example, at the level of the

health facility, the next thing is that they will not want to go

there anymore, and it breaks their treatment and puts them in a bad state.

So, that aspect on managing stigma or addressing stigma, how to address a person

presenting with, for example, severe pain.

How to manage someone presenting with yellow eyes and so on.

So, it's about not making that person feel different or feel less than

any other person within the room.

In addition to that, we also improve the capacity of both clinicians and

non-clinician to be able to conduct research on sickle cell disease so people

can get the capacity to use their data, to be able to collect data in their routine

service delivery, and analyse the data no matter how basic it, it might look and

use that information to be able to take informed decisions on how to manage care

and provide structures for people with sickle cell disease within their context.

So, I think that individual and institutional research capacity

component for this project is also really very important.

Dr. Kim Ozano: And for our listeners, the episode before and after, this one covers

quite a lot of that in detail as well.

So, that's really useful to make that connection.

What I'm learning is there's lots of different capacity strengthening,

right from the community level all the way through the health system to the

general public and also policymakers

. What I'm interested in now is that the PACTS programme works across three

countries, and I'm guessing the capacities and the assets and the strengths in

each of those countries is different.

How is that managed in the programme?

That's a very good question.

I think regarding the media components, even though there are

three different countries, Ghana, Nigeria, and Zambia, many of the

themes that occur in one country tend to also occur in other places.

Dr. Kim Ozano: Okay.

But we also wouldn't say that because of that

we do only one assessment in one country and then use that result

and apply in the other countries.

We had to assess all the three countries, and then look at the

common themes and then build their capacity with a focus on those

themes, but also, where there are some differences, we needed to address that.

So, we compare the general themes alongside specific country needs as well.

We also evaluate people's capacities and capabilities

before engaging them in the capacity-strengthening process.

While we find a lot of common themes cutting across all three countries,

we also find some interesting differences that needs context

focused capacity-strengthening.

And that is also carried out specifically for those countries and sometimes not the

entire country, but sometimes specifically for certain health facilities or certain

communities that have a particular need.

We are trying to make it very people-centred or patient-centred.

So, we make sure that it is context focused, value focused, needs based.

Dr. Kim Ozano: Perfect.

So, you're partway through the programme now?

What's coming next?

We need to do a lot of dissemination.

But the good thing with this project is that we are having certain activities

that we embed dissemination in it.

So, for the action research cycle, work package where we do standards

based audit and participatory action cycles with community teams.

The standard based audit are with clinical teams.

We meet every three to four months.

The two teams meet to discuss their findings, to share findings, and discuss

what people-centred care means to the people with sickle cell disease.

During those meetings stakeholders, some policy makers, are invited

and so they already embedded in that process of dissemination

in the course of the project.

And then in addition to that, we would have the normal academic outputs like blog

posts and policy briefs and academic peer reviewed journals and journal articles.

And then we are going to have dissemination workshops as well towards

the end of the projects in each country.

The good thing which I really like is the fact that we are

not waiting for the end...

Dr. Kim Ozano: yeah.

To disseminate we are carrying out dissemination in

the course of the project rollout.

Dr. Kim Ozano: This sounds like a beautiful process to me.

So, I think what I would like to know is, the process sounds so clear.

We're it now and you're all smiling.

Is there challenges and what are they?

Some of the challenges that we have experienced

in growing the programme include difficulty in influencing policy.

Some countries, let me use Nigeria as an example.

Some policies are difficult to change because of availability of funds or maybe

the economy of the country and so on, but we've gotten some commitment from some

policymakers, from some leaders to say, okay, this is the level we're going to go.

Dr. Kim Ozano: It sounds like another capacity, how to navigate

and work with policymakers in that mutually beneficial way as well.

A challenge.

Yeah.

I think also regarding the media component, typically when you read

an article published in a journal, you don't often see journalists

as co-authors of those articles.

And so, if you are now bringing journalists and researchers together

to work on manuscripts, that may lead to even publications, certainly

there will be some challenges.

And we are trying to navigate how that will be resolved.

Part of the reason is because of course, researchers, their

work is just to publish.

For journalists, their work is also published, but not in the

context of the researchers.

Dr. Kim Ozano: Yeah.

Yeah.

The two have agreed and we are working together to ensure that

they could make that happen.

It can be a bit challenging when you're trying to not just bring in

structural changes to be able to manage sickle cell disease better, but also

changing the behaviour of healthcare practitioners or healthcare professionals,

to be able to perform better in terms of maybe patient reception,

managing stigma and things like that.

So sometimes we do have um, pushbacks.

It does take time for people to adapt but we just keep going.

We never relent and we make sure that we get to the point.

And the second aspect is though you said 'just', researchers 'just' produce

outputs, I think producing outputs is really vital and very challenging.

This is a multi-country project and a lot of data is being collected, using various

different methods, and I think for us to sit down and be able to draft all of these

outputs, whether to be used for physical dissemination or peer review publications

or policy briefs, it's very challenging to choose what content to really put

where that will get to the best audience.

Dr. Kim Ozano: Okay.

So it sounds like learning is happening all the time.

So, I'm gonna flip it now and thinking about advice for others

that want to strengthen capacity within research programmes, what

piece of advice would you give?

They should think big.

Don't think anything is impossible.

When you think big, you should go into the field and then try.

Sometimes you just need to show someone what's the impact of what you want to do,

and then the person will influence change.

Don't think nothing is impossible.

So that would my, that would be my advice.

Dr. Kim Ozano: Think big and think possible.

A very important theme that especially came up

in the three countries from journalists is carry us along.

They are telling researchers, carry us along.

Typically, researchers just invite journalists to come and cover events

at the beginning, and then towards the end when they're disseminating.

This time, the journalists say they want to be part of the process.

So, any stakeholder that you want to involve in such project, it is

important you involve them early and you keep working with them

till the very end and even after.

Dr. Kim Ozano: So, don't just engage at the beginning or just at the end

all the way through the programme to make sure everybody's on the same

page and has the same aspirations.

Yes.

Dr. Kim Ozano: Fantastic.

Take us home with one piece of advice Motto, please.

I think Bernard has really said what was really bubbling

in my mind to say, which is at the start of your project, actively

include capacity-strengthening from the beginning, and then collaboration,

co-creating the capacity training needs and activities or interventions.

Because when you collaborate with the team from the beginning to the

end, you are building a system of sustained interventions where teams

and individuals pick up or embed key components of that capacity-strengthening

within your routine systems.

Dr. Kim Ozano: Fabulous.

So, really bringing home that co-creation, moving together,

think big for sustainability and longevity throughout the process.

Well, listeners, that brings us to the end of this second episode in our miniseries

on research capacity-strengthening.

Today, we heard how inclusive approaches spanning clinicians,

journalists, programme managers, and communities can help bridge the know-do

gap and support more sustainable people-centred health systems.

In the final episode of the series coming up soon, we'll turn our attention

to the next generation of researchers hearing from PhD candidates across the

PACTS programme about the realities of progressing a doctoral journey while

contributing to health systems change.

So, if you found this episode valuable, please take a moment

to subscribe, rate, and review on your preferred podcast platform.

It really helps us to reach more listeners and grow these important discussions.

You can also find us on LinkedIn at the Stop, Collaborate, and Listen Agency

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And on Blue Sky at CCS podcast.

You will find here updates, conversations, and new episode releases.

Until next time, stay curious, stay engaged, and let's continue challenging

the systems that shape global health.