In this two-part mini-series we are focusing on health systems strengthening- what it is, how to do it and what action is needed to ensure that the approach is embedded in discussions at key global events and discussion platforms.

This episode follows on from the first episode from the Centre for Health Systems Strengthening at the Liverpool School of Tropical Medicine (episode 60) which focused on the health diplomacy and how researchers can advocate for health systems strengthening approaches and community voices in health diplomacy spaces.

Today we hear from two advocates who have been acting within health diplomacy spaces and as researchers. We hear from Emmanuel Zaizay, who is affected by the Neglected Tropical Disease Buruli Ulcer, about his experience of growing skills and capacity to communicate the needs of people affected by stigmatising neglected tropical diseases.

We also hear from Maurine Murenga, a TB advocate who has represented the TB community in high level UN meetings. She is open and honest about both the strengths and opportunities of being an advocate, but also what this means to her on a personal level. Her open reflections are really critical to how researchers function when engaging with communities.

Episode guests:

Dr Kerry Millington - Research Uptake Manager, Liverpool of Tropical Medicine

Kerry has been working in global health for over 20 years with a keen focus on ending the tuberculosis epidemic. A key part of her work is developing trusted relationships with range of stakeholders to work in partnership, in collaboration and in a coordinated way ensuring the academic and health professional voice credibly informs decisions that impact on health. This can range from co-creating research ideas to influencing policy and political commitments. A key stakeholder to engage with is the voice of TB survivors and advocates to accelerate action for those in most need of innovations in TB care and prevention to transform lives.

Maurine Murenga - Coordinator of TB Women Global

Maurine Murenga is a passionate advocate for the health, development and human rights of women and children. Maurine’s passion for advocacy is driven by her lived experience, and the inequality and vulnerability that young women and adolescent girls experience in her community.

Maurine is currently the coordinator of TB Women Global, Board Member of Unitaid, Friend of the Fight US and EGPAF Kenya. She is a former board member of the Global Fund to fight AIDS, TB and Malaria and is also a member of WHO's Global Accelerator for Pediatric Formulations Advisory and Union Working Group Gender Equity in TB. In Kenya – Maurine is a member of the Global Fund Country Coordinating Mechanism and Elimination of Mother to Child Transmission of HIV Committee of Experts.

Emmanuel Zaizay – Co-researcher and advocate, REDRESS, Liverpool School of Tropical Medicine

Emmanuel Zaizay is from Lofa County, Voinjama District. He works with REDRESS as a coresearcher and was recruited as a patient affected person having been diagnosed with Buruli ulcer. He also serves as a data collector, working in photovoice settings and participatory methods such as bodymapping and focus group discussions.

Useful links:

• S8E3 - Being a co-researcher with lived experience of an NTD - Emmanuel Zaizay, who is a peer researcher in the REDRESS programme and is affected by Buruli Ulcer, a neglected tropical disease, features in this earlier epsiode. He shares with us the value of learning new skills, through becoming a co-researcher, which has helped him better connect with his community and contribute to the improvement of medical and psychosocial services for people living with NTDs.
• CHESS - Liverpool School of Tropical Medicine - CHESS is a multi-disciplinary group using research and teaching to strengthen health systems and to improve health and well-being amongst the poorest and marginalised in low and middle-income countries (LMIC).

Want to hear more podcasts like this?

Follow Connecting Citizens to Science on your usual podcast platform or YouTube to hear more about the methods and approaches that researchers apply to connect with communities and co-produce solutions to global health challenges.

The podcast covers wide ranging topics such as NTD’s, NCD’s, antenatal and postnatal care, mental wellbeing and climate change, all linked to community engagement and power dynamics.   

If you would like your own project or programme to feature in an episode, get in touch with producers of Connecting Citizens to Science, the SCL Agency.  

Kim Ozano: 00:00:04

Hello listeners, I'm Dr.

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Kim Ozano and this is Connecting Citizens

to Science, a podcast where we discuss

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how researchers across the world try to

connect with communities and people to...

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Solve global challenges together.

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This is a second part of a two part

mini series where we have been really

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focusing on health system strengthening.

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And today's episode, we get

to hear from two advocates who

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have been acting within health

diplomacy spaces and as researchers.

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We hear from Emmanuel Zaizay, who

is affected by Neglected Tropical

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Disease Buruli Ulcer, as he talks

about his experience of growing

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skills and capacity to communicate the

needs of people he is representing.

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We also hear from Maurine Murenga,

who is a TB advocate and has been

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present in high level UN meetings

to represent her community.

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She is open and honest about both

the strengths and opportunities of

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being an advocate, but also what

this means to her on a personal

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level and what she's experienced.

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Her open reflections are really

critical to how researchers function

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when engaging with communities.

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Enjoy the episode

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This episode follows on from the

first episode and both are from the

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Centre for Health System Strengthening

at the Liverpool School of Tropical

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Medicine, or CHESS for short.

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In the first episode, we focused on

something called health diplomacy and how

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researchers can advocate for health system

strengthening approaches and community

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voices in these health diplomacy spaces.

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So if you haven't had a chance to listen

to that as yet, please do go back.

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It's really quite enlightening.

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One of the guests from

that first episode was Dr.

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Kerry Millington, and she's joining us

today as a co host as we speak with Mr.

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Emmanuel Zaizay and Ms.

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Maurine Murenga, who are

both experts by experience.

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They both have lived experience of

navigating complex health systems

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in different contexts, and they

are advocates for strengthening

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health systems and care pathways.

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They are going to help us add depth of

understanding about how best to embed

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community knowledge and lived experience

into these health diplomacy spaces.

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Maurine Murenga is a TB HIV survivor

and coordinator of TB Women.

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She is also on the steering committee

of The Union's working group on gender

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equity in TB and very impressively,

closed the UN multi stakeholder hearing

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on the fight against tuberculosis.

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We will also be hearing from Emmanuel

Zaizay from Lofa County in Liberia.

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Emmanuel is a person affected by the

neglective tropical disease Buruli

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Ulcer, and he will be speaking

about community engagement from his

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perspective as a person affected.

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We have heard from Emmanuel before

on season eight, episode three.

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So if you want to hear more

from Emmanuel, check that out.

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So, for this episode, let's hear from Dr.

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Kerry Millington.

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Kerry, welcome to the podcast,

this time as a co-host.

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Tell us a bit about yourself and then

set us up by outlining how the existing

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political processes around health system

strengthening are trying to include the

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voices of people with lived experience.

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Kerry Millington: Hi everyone, I've

been working in academia for over 20

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years on global health and most recently

I've been working with a range of

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stakeholders to ensure health research

informs policy and practice to improve

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health and sustainable development.

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I'm privileged to work with affected

communities and advocates whose voice

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should always be up front and heard.

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For example, I work on tuberculosis, the

world's leading infectious disease killer.

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It was wonderful to hear the voice

of the TB community so energised

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and loud at both the United Nations

multi stakeholder hearing on TB and

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the United Nations high level meeting

on TB, which was warmly welcome.

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So on that note, let us hear the

voice of our first guest today.

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Maurine, tell us the story of

how you became an advocate.

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Maurine Murenga: Hi, my

name is Maurine Murenga.

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I'm from Kenya.

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I'm a mother of two.

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I became an advocate when

I was diagnosed with HIV.

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During that time, there was no treatment,

and therefore HIV was like a process.

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You, you are diagnosed when you're

in stage one or two, and slowly

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the disease progress, and then you

reach stage four, and then after

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stage four, people would die.

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And what I saw was that our health systems

were not strong enough to handle the

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number of people who went to hospital

during stage four in their final stages of

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the AIDS disease, and therefore they asked

people to stay at home and die from home.

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It is then that as, communities of people

living with the disease, we decided

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to, we were trained on home based care

because of the stigma related to HIV.

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I learned that, most of the people

who are actually in stage four had TB.

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Most of the people who die of

TB actually die of preventable

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disease, of a treatable disease,

and therefore it should not happen.

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Everyone, regardless of where

they are, needs services.

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So that strengthened my urge to

join advocacy very seriously, HIV

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and TB advocacy, to ensure that the

generation that comes after us do

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not fight the same battles we fought.

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They don't lose lives

that can be prevented.

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Kerry Millington: Thanks so much.

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Emmanuel, tell us the story

of how you became an advocate.

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Emmanuel Zaizay: So I began to advocate

on the REDRESS project when I was

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diagnosed with Buruli Ulcer, from

the health facility in Lofa County,

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precisely, Kpakamai Health Facility.

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With REDRESS I went to all of the

activities and from the interventions

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meeting where I served as observer

the meeting, where they were training

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health workers in different areas or

teaching them how to part diagnose NTD

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conditions and how to see if, if what

is Buruli Ulcer and what is leprosy.

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From my actions, I was chosen to serve

as co-researchers in the process of,

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uh, doing patient survey, new patient

survey, and also doing a follow up and

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also from the baseline aspect, where

we went to do health workers interview

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to know how many cases can surface a

month or a day within the facility.

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I serve as peer advocate and

also where other people call me,

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other persons affected, call me.

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'Oh, please, please come for me.

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I'm in this condition.

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Please come and talk to me',

and I go and share my stories.

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And that is what I do.

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Kerry Millington: And how do you

think speaking out breaks down stigma?

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Emmanuel Zayzay: I think speaking

out breaks stigma because uh, I have

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the life experience, where I almost

got crippled, I no longer wear short

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trousers, but when I go talking to persons

affected, I show them my conditions.

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So from the real pictures of my

condition, you see, you get convinced

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that I can make it because this man

with the kind of condition he got

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okay, and today he's serving as an

ambassador for our project and he's

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serving as a peer advocate for, for

our community and our persons affected.

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So I think I can hear by his

advices and go by what our treatment

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he took to get to this level.

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That alone can help them, it can

change, it can change the community.

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It will help the Ministry of Health and

also to the health facilities because

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new patients will be pulled in because

I have gone to the community with my

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experience with showing my wound marks,

showing the mark to the community.

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As I was speaking now, we got more

than 15 persons, 20 persons that

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have, because of my influence or

because of my story sharing with

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them, they are coming for treatment.

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So those are things that I do.

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And that is what I need.

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I need support from other partners to,

to make me a ambassador for persons

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affected in my country, so that I

can help to eliminate NTDs globally.

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Kerry Millington: You are so

positive and a wonderful role model.

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Thank you so much for sharing that

journey of how you became an advocate..

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Maurine, What have you found

worked well in communicating what

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you need and the needs of others?

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Maurine Murenga: For us to communicate

our needs and the needs of others.

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It took a lot of different interventions.

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It depended on the context.

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There are times when dialogue helped.

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There are times when we needed to

really demonstrate and fight back.

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Um, what we call resistance because when

our health systems cannot manage the

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number of people that need services, they

tend to go into a motion of burying the

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head in the sand or being very defensive.

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And so it takes a lot of pushback,

a lot of fighting, for us to be able

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to really communicate the needs of

the people and the importance of

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ensuring that we are saving lives.

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So we had, um, we had moments

where we demonstrated.

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We had moments where we got

into trouble with authorities.

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We also had moments where we were able

to just have dialogue with decision

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makers and get our voices heard.

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So what I would say it was a

mixture of interventions, um,

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that worked, but we always started

with an opportunity for dialogue.

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If that didn't work, then we

would take it to the next level.

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Kim Ozano: Okay, and Emmanuel, over the

last year, you've been speaking with

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ministers and lots of important people.

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Were you nervous at first and what

helped you to become more confident?

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Emmanuel Zaizay: So I was, I was

nervous at first, my first time

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meeting with deputy ministers, uh,

meeting with former ministers, that

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was at the Murex Plaza, where REDRESS

had a intervention meeting, where we

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met with those, those hierarchies.

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I found it difficult, but the second

time meeting where we were able to meet

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with, with the NTD director, Karsor

Kollie, things became easier because it

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was not my first time and I overcome it.

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I imitated what people were

doing and I did the same thing.

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While it's true, I have now been

out of school for more than nine

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years because of my condition.

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So, speaking in front of a

group has been a challenge.

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But later, after some time, I overcome it.

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And I came, I came to get used to it.

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And after that, I'm

getting flexible with them.

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Kim Ozano: I just wonder from a

personal perspective, being an

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advocate is obviously a very personal,

very emotional, um, role to have.

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How have you balanced this yourself

with your desire to make change

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and your own personal needs?

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Maurine Murenga: As an advocate,

internally, sometimes I give up

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many times, but then I reflect and

I say, well, giving up will not

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take me to where we want to go.

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And so you put yourself out there.

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The life of an advocate is met with a

lot of, like I said, resistance, and some

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of our health systems are structured to

look at advocates like people who are

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critics, who mean to criticise and bring

down the efforts that have been made.

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Um, I can also say that, uh, because of

some of the things we faced, especially

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dealing with the HIV and stigma and people

dying, there was a lot of, uh, violent

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moments, or there was a lot of times when

advocates became very violent, and we took

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to the streets many times than we took

to the boardrooms to have discussions.

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So I think there's lots of lessons that we

have learned in terms of balancing between

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pushing, negotiating, um, influencing.

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And so there's always a need for a

balance, but I would say that as an

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advocate, I have created as many enemies

as I've created friends, and it takes

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a lot of thick skin to survive some

of the backlashes we get as advocates.

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I have been cyberbullied.

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My kids have been cyberbullied.

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Um, some wrong information about me

has been put out there, and all this is

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because of my engagement in advocacy.

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So I would say that real, real advocacy

is not for the faint hearted, but if

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you you need to get where you need to

get, then you have to do what it takes.

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So, real advocates are never compromised.

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We are very dedicated and we

always look at the positive side

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from our minds we always see the

light at the end of the tunnel.

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So we work so hard to get through

this tunnel, regardless of the

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many challenges that we get.

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It is a very thankless space,

but again, it's very satisfying.

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When you see people's lives getting

better, when your own life gets

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better, then you, you see the fruits

of the advocacy and you enjoy them.

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Kim Ozano: I think that really

helps us to understand the context

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you're working in and also the

challenges of being an advocate.

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Do you think that researchers, decision

makers and implementers need to consider

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safeguarding and making safe spaces for

participation of people like yourself?

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Maurine Murenga: I definitely think,

um, researchers, programmers, need

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to have spaces for people like me.

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A story is told of, um, it's not a story.

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It's actually an experience of

when we were developing the post

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exposure, prophylaxis prep, oral prep.

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And there was a study, in Kenya, to roll

out oral prep among the sex workers.

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So because they were not engaged in

the research, they were not engaged in

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designing the programme, we just saw the

final commodity that had been brought

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and we had mobilised them for enrolling.

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A lot of work went to prepare the project

for enrollment of the sex workers.

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Everything was put in place.

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All the procedures and processes

were followed and then the

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day of the launch came.

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And they were very excited about oral

prep, so they came in big numbers.

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But when they came, the only

challenge they had with the whole

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process was the color of the pill.

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The pill was blue, and they had a problem

with the color of the pill because there

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was some drugs that were used to drug

people that were also blue in color.

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And when sex workers were found with these

blue pills, they would be beaten, because

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it was assumed that they were going to

drug their clients and steal from them.

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So the color of the pill alone

aborted the whole process.

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So we could not continue

with the enrollment.

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They told us, well, if you

change the color to white or

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pink or any other, please let us

know, we will come and enroll.

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So, engagement is very, very critical.

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It helps us shape, it helps us design

programmes that are people centered,

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that will work for the people.

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So the voice people like I bring to

the table is just to guide the process.

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We are a very critical component

of the design, the research, the

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programming, um, it is very, very

critical that our voice is there so

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that we are shaping the process to

succeed, because we know what works.

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Kim Ozano: Maurine thank you

so much for these insights.

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I think you've raised some very important

issues that, you know, there are

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challenges, but the rewards are strong.

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We need to think about safeguarding.

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We need to think about spaces

for people to participate.

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So, if you were to give advice, Emmanuel,

to someone who is like yourself, affected

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by an NTD, but wanted to become an

advocate, what advice would you give them?

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Emmanuel Zaizay: My

advice is is to be strong.

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If you got means to go to school,

we could share with you to sustain

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yourself, to learn, to come

back and help persons affected.

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And to help your community and to

work along with a health system

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in a country or in your community.

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Kim Ozano: Maurine, what advice do

you have for both people who want to

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become advocates to make changes in

health diplomacy spaces, and also for

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researchers and programmers so that

they can make sure people like you have

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the space they need to make change.

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Maurine Murenga: My advice

to advocates and activists is

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that they should be informed.

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Um, knowledge is power and one of

the things that makes it successful

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in this field is that when you have

your knowledge and your facts right.

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Collaboration and

networking is also very key.

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There's, there's power in more.

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We are stronger together

than we are apart.

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So collaboration is important, and

we need resources to ensure that

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these networks are strengthened.

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There's also the component of being

strategic which I talked about, to know

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when to have a dialogue to know when

to get a bit more action, especially

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when you want to do demonstrations

to know when to be persuasive,

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to know when to have trade offs.

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So you really need to be strategic

in how you approach advocacy.

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And then the most powerful thing

we have as advocates is our voice.

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So we always say that, use your voice

with every opportunity you get, whether

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it is a meeting talking about male

circumcision and your interest is

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preventing mother to child transmission.

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Just find a way of getting it in there!

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That's one of the strategies that we have

found very successful using our voice and

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ensuring that we are getting into those

spaces where those decisions are being

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made and participating meaningfully.

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Kerry Millington: I don't think

it's just researchers that are able

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to provide those opportunities,

it's all the stakeholders, and it's

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forming those connections, trusted

relationships with the stakeholders.

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: 00:17:44

So when those opportunities arise

to engage with policymakers or to

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engage with politicians, you can

bring the voices of the community to

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them for them to understand through

pictures, through words, through

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discussions, the challenges that

people affected by these diseases face.

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Maurine Murenga: Another one thing

that I found very satisfactory is

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about empowering others, because

advocacy is not just about one's

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voice, it is about empowering

others to find their voices too.

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So encouraging people affected by

the issues to advocate and share

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their stories and experiences

amplifies what we are doing.

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So that is another critical, uh, thing.

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And then it's about celebrating victories.

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We get a lot of challenges sometimes

and we forget to share our victories.

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One day someone told me that every

time they give us a document to review,

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we always find the negative things.

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: 00:18:42

We never comment on the

positives in that document.

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Uh, so I think celebrating victories, big

or small, um, is, is, is really important.

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And recognising each other, the

little progress or the, the,

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whatever, or the milestones we

have made, fuels that motivation

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to continue in fighting for change.

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So...

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Always remember to

celebrate the milestones.

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Another one is about self care.

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I say, I shared some of the challenges

that we experience as advocates.

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So the self care is

really, really critical.

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: 00:19:18

It can be very emotionally draining this

space and, and mentally draining as well.

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So taking care of ourselves,

prioritising self care is very critical.

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I learned that later, but it has really

been helpful because nowadays I find time

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for self care and also having an ability

or a network that can support fellow

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activists to support fellow advocates,

um, so that we are not having burnouts.

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: 00:19:45

And then, um, the issue around resilience.

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It's never, like, a walk in the park.

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Um, it's not always gonna be easy.

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: 00:19:54

But resilience is very, uh, important.

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Setbacks are inevitable, but that

shouldn't really kill the spirit of

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advocating for what we really believe in.

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So, we have learned to

learn from failures.

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To adapt to new strategies, keep

pushing forward and remembering

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that change takes time.

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Our perseverance is important in ensuring

that we make a difference in the long run.

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Um, so, for scientists and programmers,

we may not have the same skill set,

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but simplicity goes a long way when we

attend your meetings and your forums

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and your, uh, spaces, making it simpler

for us to be able to understand helps

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us to contribute more meaningfully.

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: 00:20:41

So sometimes the science, science is

too much and, and we find ourselves

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lost in the process and then,

uh, you don't get a lot from us.

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So I think, uh, for that

is about simplicity.

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It's about trusting us, trusting our

data, trusting what we tell you about

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what works and what doesn't work.

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Kerry Millington: I think it's really

key to maintain that energy, both

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through the good and bad times.

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And you talk, Maurine, about finding

the opportunity, every opportunity you

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can to give your voice, but I think we

also have to find the opportunity to

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make sure that voice is heard as well.

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You know, we're very much trying to

work towards that with the researchers

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: 00:21:24

to have that exchange of ideas that can

be understood from both perspectives

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to ensure we work effectively together.

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Because, as you said, we all have the

same common goal, which is to end TB.

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And if we can do that better, then we

will achieve this quicker for everybody.

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Kim Ozano: Thank you

so much to our guests.

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: 00:21:42

I've learned so much today and

it's really clear that we as

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: 00:21:45

researchers have a lot to consider.

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: 00:21:48

We need to understand that it's our

responsibility to provide opportunities

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: 00:21:53

for advocates to develop soft and hard

skills so that they feel confident

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and comfortable communicating the

needs of the communities they are

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representing in different spaces.

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: 00:22:04

Don't forget to check out the previous

episode, which is all about health

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: 00:22:07

diplomacy spaces from the Center

for Health System Strengthening.

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: 00:22:11

And hit that subscribe button

now so you can get our next

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: 00:22:14

episode as soon as it's available.

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: 00:22:16

Thank you for now and have a good day.

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: 00:22:18

Bye bye