Hello listeners and welcome to the Connecting Citizens to Science podcast.

I'm Dr.

Kim Ozano and we are proud to be partners with the Liverpool School of Tropical Medicine.

Over the last few weeks, you have heard episodes that have captured learning from the seventh Global Symposium on

We also linked with LSTM as they celebrate their 125th year of being leaders in global health, and

They presented sessions that captured and shared community voices, including people from informal

We also heard open and transparent discussions about decolonising health research and how to promote more equitable

LSTM had two satellite sessions, one entitled Actors and Alliances to Transform Health and Wellbeing in Cities.

That really brought home the importance of identifying synergies and gaps to support the

Another session shared experiential learning from health policy and system research learning sites.

The interactive panel highlighted different experiences of learning sites on three continents, and they discussed

Other sessions focused on the power and politics of scaling up a health intervention, and they

I, myself, participated in a live interview with Linet Okoth, who is a researcher from LVCT in Kenya, and a long-term

We discussed how power manifested in health systems and how this power can be mitigated and negotiated.

The audience were also live interviewers in this very engaging session.

We also saw PhD students and partner researchers proudly represent the school by being selected as emerging voices.

Shahreen Chowdhury, Linet Okoth and Bachera Aktar, were clearly demonstrating their leadership role in the future of global health.

In this episode, we will be sharing some of the conversations that we captured in the halls at the conference, and we end with a

Enjoy the episode.

I am here with Jhaki at the Health Systems Research Symposium.

I was in your session yesterday where I heard you use something called Digital Diaries.

That intrigued me.

Can you tell us first of all who you are, where you're from, and then explain a little bit about what is digital diaries?

Thank you Kim, and happy to do this podcast with you.

So I'm Jhaki Mendoza and my background is medical anthropology and the work I've been involved is called RESPOND; Responsive and Equitable

It's based in the Philippines and Malaysia, where we wanted to know what are the barriers and enablers to hypertension care in

We did this specs, methods design, quantitative and qualitative methods.

For the qualitative methods where I've mostly worked on, I was working as one of the research associate in the Philippines side.

In the qualitative methods we did, um, in depth interviews and the digital diaries.

In the in-depth interviews, it's the usual one on one interviews with selected patients.

It was two interviews a year apart.

We had our first, um, in-depth interview and another in-depth interview after a year.

Inbetween that year, that's where we, um, employed the digital diaries because we wanted to capture the lived experiences.

The team designed this method because it's recorded as one of the, uh, innovative tools to capture lived experiences because definitely

The digital diaries was helpful ideally to capture what happens near real time as people navigate through their healthcare journey.

That's essentially, uh, the purpose of the digital diaries in the context of our research.

Okay, that's great.

So a digital diary, is it using WhatsApp or what?

Can you explain the practical elements?

Okay.

Okay.

In previous studies where diaries as a tool was, um, used, they noticed some challenges with it in terms

Where essentially the participants will be provided that, 'Oh, here, this is how you do the diaries,

There are certain disadvantages with using it as noted in other studies because there's the risk of the participants

We've worked with with an organisation called On Our Radar where it was specifically designed, the digital diaries,

It was designed to capture texts, photos, videos, audio, everything, so that's why it's called digital.

Also since it is a dedicated platform, it has other functions such as it serves as a data storage tool.

The dedicated platform had that function where it's easier for the researchers to organise systematically, organise

That's the whole concept or idea in terms of the technicality of it.

That's why it was deemed to be innovative because it offers other functions that's basically

The tool sounds very impressive as you're describing it.

Uh, you know, it sounds innovative.

It sounds like it also builds on people's abilities; whether they prefer photographs or writing or videos.

The interesting thing in your session though is you said it was a great idea, but in practice it didn't work as well.

Can you tell us about that?

Yeah, yeah.

So essentially it was a great idea.

It was innovative because participants have basically options on what they wanted to share, on

The main thing that we found is that we weren't really getting a lot of in depth narratives as we've expected.

Previous studies, they've done this, they've gotten quite a lot of narratives, but in our case, in hypertension, it wasn't the case.

Well, the main thing that we, um, think is that it's the condition.

It's really important to consider, in doing diaries, because in our study, Hypertension among participants, it's not really something

Therefore, they don't usually think about it unless there are symptoms, unless they have certain health encounters, which

In terms of doing the diaries, we think it's the disease itself because it's invisible to them.

It's really not something that they would think about and reflect on about, so we think, for instance, in other,

Those patients probably have the ability to really think through the disease and really create reflections about their lived

That's one of the challenges we faced really is we didn't really get a lot of entries from the

I think it's great that you're so honest about that as well, because we hear, you know, so many success stories, but it's

One of the things that was mentioned in your session was if it had been co-designed a little bit more with participants.

Do you want to talk about that?

Yeah, yeah.

The one they mentioned is in terms of the methodological aspect of it, but we've also encountered technical issues with using

In the case of the Philippines, our mobile providers, it's not really equipped to cover multimedia messages.

You can't really use your mobile numbers to send in multimedia contents.

If you want to be more interactive in terms of communicating with your peers or with anyone else, we mostly use like apps, social media apps.

The dedicated platform was limited to that.

It assumed that, okay, just use this number where you can send in your text and if you want to send in photos, audio videos, or multimedia

We've been limited to this aspect of multimedia contents, but then some of the respondents would say 'can I

In terms of their preferences and how they wanted to communicate, and in terms of the technicality of it, we

Thank you so much for sharing that.

How are you enjoying the conference?

Have you got any takeaway messages you'd like to share?

This is actually a first time to attend it in person, so it's quite an experience to be able to meet

So, yeah, it's quite an experience and it's a memorable one.

Thank you so much.

Well, enjoy the rest of the conference and

bye for now.

Thank you, Kim.

We are here at the Health Systems Research Symposium, day four, Connecting Citizens to Science, and I am here with Maria.

Maria came to me and she was talking to me about something called 'verbal autopsy', which I was very interested in.

It's actually not participatory so much, but she has turned that method around in the data to make it participatory.

So we're going to hear a little bit more about that.

Maria, thank you for joining us.

Tell us about yourself and the project.

Thank you very much, buenas tardes.

My name is Maria van der Merwe, I'm based in South Africa and I'm a co-investigator in the VAPAR Project.

So VAPAR stands for Verbal Autopsy with Participatory Action Research.

Our project is based in Mpumalanga province, the North Eastern corner of South Africa, and we are based at Health

That is a, a unit of the MRC Wits, University of Witwatersand in a rural setting.

Great.

Thank you very much.

So, verbal autopsy, tell us what this is.

So verbal autopsy is a method applied specifically in context where you may not have data available on births and deaths.

Verbal autopsy is collected in our context at the, MRC/Wits Agincourt unit through their field workers.

It is a standardised set of questions that is used after a death occurred in a family.

In this setting, it is collected routinely and from those questions through of course, algorithms and artificial intelligence and

That allows us then to have information that can augment what we have available from the health system, because our health

In our programme, we've also developed it further in what we refer to as COMCATs, and those are referring

That's specifically looking at in the days prior to death, specific circumstances that may have attributed to the death,

That also brings the circumstances around the death into the picture and allows us to have a closer look

That's really interesting.

So when we were talking, you were saying that this data is accessible for you and that you use that data to

Tell us a bit more about that.

So that is the PAR part of VAPAR, the participatory action research.

What we intend to do is we intend to bring the community voice forward into the health system.

We engage with local communities in the rural setting in Agincourt area in Mpumalanga, and we work with them through, uh, a series

They can nominate specific topics and then through a process of ranking, the priority topic is then um, identified.

We then apply the data, the very quantitative information from verbal autopsy in terms of the mortalities, to illustrate

So let's say for example, they identify HIV mortality to be a problem or TB mortality, we are then able to use the quantitative data, not

That assists us to have two sides of it.

So what the community regards as a priority, demonstrating it with hard data to show what the extent is.

How do you share that data with communities in away that's useful for them?

We, again, use different participatory methods, and it is always in a participatory setting.

So we have a series of workshops where we would then sit down with them, share the data in different formats.

Of course we would develop research briefs.

We have it translated in the local languages, and our workshops are always facilitated by a person fluent in the local language.

We then engage collectively with the community members and their representatives, along with health systems stakeholders.

We put them in one room using, um, participatory methods, and then plan together specific actions on an action

In that way, we are bringing the community priority to the health system, putting the health system and community into the

I think part of the magic of that process is it's not 'us' and 'them', it immediately becomes only 'us' because when

That is strongly built on trust.

The first few sessions is mostly around ensuring that there's common understanding and trust, and we have specific,

That takes skilled facilitation, to ensure that the community and the health system are equal when we engage with one another.

That's really useful.

Do you ever have the community members help in that facilitation in managing that power?

That's absolutely what has happened.

Further along in our process or in our cycles, we started working very directly with our community health workers

They themselves are then facilitating sessions.

It's wonderful to see not only their personal development, their their confidence, but also how the managers, or shall say superiors in the

It is really like a magic to see them grow and develop and being able to facilitate.

Now we are planning as a next step to roll out this training of trainers that these community health workers

You've really built in that sustainability of the project, which is great to hear.

I guess I have a million questions here, but uh, we're running out of time, so tell us how the conference has been for you and any

Well, the conference has been amazing, um, of course it took a little bit of adjustment.

I think it's altitude and time zones and all of that, but after the first day or two you get over that, then you really apply your mind.

I think the main thing I've probably learned, which may sound like a bit of a cliche, but the

We are from so many different regions and so many different countries, but in the end, we have the same problem.

I was using the example earlier where, you know, when Covid was at its height and everybody's between the same storm and

It's not the same storm.

I'm starting to see our health systems the same.

If you may be in a high income country or low income country, health systems are health systems, so some may have yachts some

I think that's my take home message.

I think that's an amazing take home message.

Thank you so much for, uh, connecting with us.

It's been a pleasure to have you and enjoy the rest of the conference.

Bye for now.

Thank you.

Absolute privilege to take part in your programme.

Thank you.

Hello.

It's the final day of the HSR Conference in Bogota, and I'm here with emerging voice participant Vivek Dsouza, who's going to be telling us

So, Vivek, thank you so much for coming to talk to us.

Please, can you tell us a bit about your current role and area of study.

Thanks a lot Beatrice, for this wonderful opportunity.

My name is Vivek Dsouza and I'm a research officer at the Institute of Public Health in Bangalore, India.

My current research focuses on understanding the implementation of tobacco control policies.

Currently in India, we have a national, tobacco control law, which is the Cigarettes and Other Tobacco Products Act, and we also have a

Our major focus is on understanding how the law and the programme are implemented in different states.

We use a realist evaluation framework for this.

One of the questions that we are trying to answer is that, why despite having a central law and a policy,

India is a huge country, 28 states and union territories.

Given that we have different contextual factors, for instance, the language is different, state jurisdictions

The geography of India, so diverse, the culture in India, so diverse, and all of these have a role to

We are trying to understand why implementation is better.

Has it progressed?

Has it not progressed or has it, you know, worsened?

We are studying three states in India.

Our major focus, our entry point to understanding implementation is to engage with stakeholders, primarily the policy makers at the national,

We have stakeholders that we've engaged with coming from the civil society groups.

We have media consultancy and media organisations that have a role to play in tobacco control awareness.

We are engaging with all of these stakeholders to understand what are their perspectives, what are the challenges

Uh, so this is a little bit about my study.

Wonderful.

Thank you so much.

It's really, really interesting to hear what a broad range of stakeholders you're engaging with in this study.

I was wondering, as the theme of this podcast is about community engagement, can you tell us, um, if and how you're

While the current focus of our project is on understanding implementation, our primary stakeholder community

At the same time, we are also trying to bring in community voices to understand, how and why for instance,

During the course of our project, which is a five year project, we organised a series of webinars which was

What we did is that, we created a platform or a space online that brought not only stakeholders from the government, but

For instance, we've had a cancer survivor sharing their experience of how tobacco was a huge problem for them and how they've had

There's a lot of stigma also attached to communities, especially to the individuals that

We've also in our webinars, have brought speakers who have undergone operations, cancer operations, or any

They have shared their experience of how, even though they were not primary consumers of tobacco, secondhand smoke or

In this way we are trying to bring in community voices on the online platform in order to share their experiences, their

While on one hand there is a lot of ample research saying that is lack of knowledge, on the ground, we've seen that despite

Through this study, we are also trying to understand how and why people still consume tobacco; the social,

That is something that through community engagement, we are trying to study and bring the voices and

Wonderful.

Thank you so much.

Inside Implementation webinars sound like a really great platform, exactly as you say, for bringing in those community voices.

Really interesting to hear about.

To round up this discussion, I just wanted to ask, do you have any reflections or take home messages from this week at

One of the key interesting themes that I was really interested was on the political factors that affect health systems.

This is something that is a constant challenge in India.

We have a three tier health system, we have different levels of government and we have different stakes when it comes to tobacco.

There are sectors or departments that are for tobacco because of commercial interest, because of the revenue that they generate.

Also there are sectors that are against tobacco because it's a public health issue, it's a public health

When it comes to politics in health systems, and power, some of the sessions on power, on privilege, on how,

Great.

Thank you so much.

I think the political thread has really run through so much of the conference, so I completely agree.

One of the things that I was also interested was on the political or the commercial determinants of health.

In tobacco you have the role of the tobacco industry, which is a really strong force, not only in convincing users to

I think the conference really helped me to understand that these kind of systems are very complex and in order to really

Yeah, absolutely.

Thank you very much for bringing in those aspects on the political and commercial determinants because we haven't really

Thank you so much for coming to talk to us and have safe travels back home.

Thank you so much.

I'm really glad and honoured.

If anybody's interested in the work that we do on tobacco control, on health policy and implementation,

That's our website.

We are on LinkedIn and on Twitter as well.

We are a small Bangalore based organisation, but we work on different, uh, aspects of health.

We have four verticals or clusters.

We have the cluster on chronic condition and public policy where we focus on chronic diseases and sort of the determinants.

Tobacco control is one of them.

We have a health services cluster.

We have a health equity cluster, that works on projects like tribal health and trying to build comprehensive primary

So we work on different aspects of health both from a policy implementation and advocacy perspective.

Great, we'll put your contact details in the post as well.

Thank you so much for coming to talk to us.

Thanks a lot.

Connecting Citizens to Science is here at Health Systems Global Conference, and I'm here with Kara Hanson and we met in the hall and

I'm Kara Hanson.

I'm Professor of Health System Economics at the London School of Hygiene and Tropical Medicine, and I recently chaired the

When we were, shaping the commission, we were starting on the one hand with the case for primary healthcare and

Yet the lens on that we were taking was financing arrangements and we ended up making the argument that in order to have people centered

So what do we mean by that?

Health financing geeks tend to think about health financing functions.

We're interested in what's called revenue mobilisation, so where the money comes from, how it's pooled, so how it's

We looked at each one of those financing functions and said 'Well, what does it mean to put people at the center?'.

I'm gonna talk about each one, if that's okay.

So the first one is, is revenue generation.

What do we mean by people centered revenue generation?

What we mean is tax, so people pay.

Nice.

Um, but that's really important because that means, because tax systems are usually structures that

Taxation is a really fair way of collecting revenue.

It's fairer, for example, than out-of-pocket payments, which is the way that many countries have a predominance of out of pocket payments.

People should be involved in providing the money and that, and there's lots of interesting thoughts about how to

The second idea then is about pooling arrangements.

This idea of bringing money together so you enable these cross subsidies.

The nice thing about pooling arrangements is they should be able to cover everyone and that those pooling

Some countries have taken a different approach, which is to use insurance or pooling based arrangements to cover

That's particularly a problem for people who have chronic conditions.

We know from evidence from some places that chronic conditions can really impoverish people, even though

That's revenue generation and then pooling.

The next is how do you get money allocated to primary healthcare and to providers.

We also think that people should be at the center of allocation arrangements.

So we're advocating for either a capitation based or a per capita based allocation mechanism that gets money from

Why per capita?

That starts with an equal amount per person, right?

You start with that equal amount, and that money then needs to be protected all the way until

The last bit of this is how providers are paid, and we make a strong case in the commission report for having capitation

Again, the reasons for this are about people, so you start with an equal amount per person that goes to a provider.

You can adjust that based on different needs.

So in a more sophisticated, capitation based system, you can enable people who are more likely to have higher

It also gives you gives providers an incentive to do promotion and prevention.

The last thing is it also gives them a really reliable and stable income source, which allows them to plan better for

I think health workers are also community members and quite often, I've heard throughout the conference,

Do you have a comment on that?

Oh, very much so, because there's two things.

One is whether their salaries are paid, which is a serious issue in many places, and a lot of that comes down, not

Also, health workers are trying to work in settings where they need resources to do what they're going to do.

So how they're paid, their salaries, but also whether they are able to respond to the very small needs for

That money really needs to get there, and the money often doesn't.

It gets either, it gets kind of filtered off or it never gets there in the first place because it gets siphoned off towards hospital care.

Making sure that money reaches those facilities is terribly important.

In terms of communities being involved in those financial decisions, which are quite complex, how do you see that happening?

How can communities be involved in dialogue, in financial issues that not all of us, um, really understand very well?

So one important role for communities in the system is to hold the system accountable, right?

If they're provided with the information about which resources should be reaching the facility, then they're in a position to complain if

That's the accountability side, so that's once the finances have reached the health system and the frontline health workers that we're

Can they be involved in the beginning of those discussions?

So sometimes those are called like short route and long route to accountability things, right?

The short route would be through having things like influence through social movements and political

The other is to elect politicians who are motivated and committed to increasing health services

Both those roots are important.

Thank you very much.

Those are terms that are really useful to know.

So finally, how is the conference?

Have you learned anything that's really been quite surprising and what advice would you have for others that really want

Well, two separate questions.

The conference is great.

One of the things I like about coming to conferences is making myself go to things that I don't know anything about.

I've just been to a session about health systems that are resilient to climate change and it's in a whole area

I really enjoyed that.

There were some great presentations.

Keeping people at the centre of PHC, we think a lot about doing that through service delivery arrangements and through

There we go.

Co-production and finance first conversation in our series about that.

Thank you so much.

Enjoy the rest of the conference and bye for now.

Bye-bye.

Well, the end of that episode brings us to the end of our adventures at the Global Symposium for Health

Many sessions at the symposium discuss the importance of considering power, politics, and participation in health systems research.

We were pleasantly surprised to hear about the plethora of tools had been developed to better engage people in decision making spaces.

It's now time to implement these tools and test them to see if they really do work in practice.

Some of the areas that were identified through our conversations were the need to work with the private sector

We also noted the growth of noncommunicable diseases and mental health as key areas of interest for health systems in the future.

Finally, nearly every conversation we had in the hall and during the different sessions we attended, discussed the importance of trust and

This has been weakened in recent years and is a priority.

Building trust takes time.

Trust is fragile, and it should never be neglected in our endeavors to ensure people are at the center of all our work.

Until the next Global Symposium of Health Systems Research, LSTM and this podcast wishes you luck in your efforts to connect with citizens.

As always, please like, rate and subscribe so we can continue to bring you evidence and practices