Shownotes
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.
Transcripts
Hello listeners, I'm Dr.
2
:Kim Ozano and this is Connecting Citizens
to Science, a podcast where we discuss
3
:how researchers across the world try to
connect with communities and people to...
4
:Solve global challenges together.
5
:This is a second part of a two part
mini series where we have been really
6
:focusing on health system strengthening.
7
:And today's episode, we get
to hear from two advocates who
8
:have been acting within health
diplomacy spaces and as researchers.
9
:We hear from Emmanuel Zaizay, who
is affected by Neglected Tropical
10
:Disease Buruli Ulcer, as he talks
about his experience of growing
11
:skills and capacity to communicate the
needs of people he is representing.
12
:We also hear from Maurine Murenga,
who is a TB advocate and has been
13
:present in high level UN meetings
to represent her community.
14
:She is open and honest about both
the strengths and opportunities of
15
:being an advocate, but also what
this means to her on a personal
16
:level and what she's experienced.
17
:Her open reflections are really
critical to how researchers function
18
:when engaging with communities.
19
:Enjoy the episode
20
:This episode follows on from the
first episode and both are from the
21
:Centre for Health System Strengthening
at the Liverpool School of Tropical
22
:Medicine, or CHESS for short.
23
:In the first episode, we focused on
something called health diplomacy and how
24
:researchers can advocate for health system
strengthening approaches and community
25
:voices in these health diplomacy spaces.
26
:So if you haven't had a chance to listen
to that as yet, please do go back.
27
:It's really quite enlightening.
28
:One of the guests from
that first episode was Dr.
29
:Kerry Millington, and she's joining us
today as a co host as we speak with Mr.
30
:Emmanuel Zaizay and Ms.
31
:Maurine Murenga, who are
both experts by experience.
32
:They both have lived experience of
navigating complex health systems
33
:in different contexts, and they
are advocates for strengthening
34
:health systems and care pathways.
35
:They are going to help us add depth of
understanding about how best to embed
36
:community knowledge and lived experience
into these health diplomacy spaces.
37
:Maurine Murenga is a TB HIV survivor
and coordinator of TB Women.
38
:She is also on the steering committee
of The Union's working group on gender
39
:equity in TB and very impressively,
closed the UN multi stakeholder hearing
40
:on the fight against tuberculosis.
41
:We will also be hearing from Emmanuel
Zaizay from Lofa County in Liberia.
42
:Emmanuel is a person affected by the
neglective tropical disease Buruli
43
:Ulcer, and he will be speaking
about community engagement from his
44
:perspective as a person affected.
45
:We have heard from Emmanuel before
on season eight, episode three.
46
:So if you want to hear more
from Emmanuel, check that out.
47
:So, for this episode, let's hear from Dr.
48
:Kerry Millington.
49
:Kerry, welcome to the podcast,
this time as a co-host.
50
:Tell us a bit about yourself and then
set us up by outlining how the existing
51
:political processes around health system
strengthening are trying to include the
52
:voices of people with lived experience.
53
:Kerry Millington: Hi everyone, I've
been working in academia for over 20
54
:years on global health and most recently
I've been working with a range of
55
:stakeholders to ensure health research
informs policy and practice to improve
56
:health and sustainable development.
57
:I'm privileged to work with affected
communities and advocates whose voice
58
:should always be up front and heard.
59
:For example, I work on tuberculosis, the
world's leading infectious disease killer.
60
:It was wonderful to hear the voice
of the TB community so energised
61
:and loud at both the United Nations
multi stakeholder hearing on TB and
62
:the United Nations high level meeting
on TB, which was warmly welcome.
63
:So on that note, let us hear the
voice of our first guest today.
64
:Maurine, tell us the story of
how you became an advocate.
65
:Maurine Murenga: Hi, my
name is Maurine Murenga.
66
:I'm from Kenya.
67
:I'm a mother of two.
68
:I became an advocate when
I was diagnosed with HIV.
69
:During that time, there was no treatment,
and therefore HIV was like a process.
70
:You, you are diagnosed when you're
in stage one or two, and slowly
71
:the disease progress, and then you
reach stage four, and then after
72
:stage four, people would die.
73
:And what I saw was that our health systems
were not strong enough to handle the
74
:number of people who went to hospital
during stage four in their final stages of
75
:the AIDS disease, and therefore they asked
people to stay at home and die from home.
76
:It is then that as, communities of people
living with the disease, we decided
77
:to, we were trained on home based care
because of the stigma related to HIV.
78
:I learned that, most of the people
who are actually in stage four had TB.
79
:Most of the people who die of
TB actually die of preventable
80
:disease, of a treatable disease,
and therefore it should not happen.
81
:Everyone, regardless of where
they are, needs services.
82
:So that strengthened my urge to
join advocacy very seriously, HIV
83
:and TB advocacy, to ensure that the
generation that comes after us do
84
:not fight the same battles we fought.
85
:They don't lose lives
that can be prevented.
86
:Kerry Millington: Thanks so much.
87
:Emmanuel, tell us the story
of how you became an advocate.
88
:Emmanuel Zaizay: So I began to advocate
on the REDRESS project when I was
89
:diagnosed with Buruli Ulcer, from
the health facility in Lofa County,
90
:precisely, Kpakamai Health Facility.
91
:With REDRESS I went to all of the
activities and from the interventions
92
:meeting where I served as observer
the meeting, where they were training
93
:health workers in different areas or
teaching them how to part diagnose NTD
94
:conditions and how to see if, if what
is Buruli Ulcer and what is leprosy.
95
:From my actions, I was chosen to serve
as co-researchers in the process of,
96
:uh, doing patient survey, new patient
survey, and also doing a follow up and
97
:also from the baseline aspect, where
we went to do health workers interview
98
:to know how many cases can surface a
month or a day within the facility.
99
:I serve as peer advocate and
also where other people call me,
100
:other persons affected, call me.
101
:'Oh, please, please come for me.
102
:I'm in this condition.
103
:Please come and talk to me',
and I go and share my stories.
104
:And that is what I do.
105
:Kerry Millington: And how do you
think speaking out breaks down stigma?
106
:Emmanuel Zayzay: I think speaking
out breaks stigma because uh, I have
107
:the life experience, where I almost
got crippled, I no longer wear short
108
:trousers, but when I go talking to persons
affected, I show them my conditions.
109
:So from the real pictures of my
condition, you see, you get convinced
110
:that I can make it because this man
with the kind of condition he got
111
:okay, and today he's serving as an
ambassador for our project and he's
112
:serving as a peer advocate for, for
our community and our persons affected.
113
:So I think I can hear by his
advices and go by what our treatment
114
:he took to get to this level.
115
:That alone can help them, it can
change, it can change the community.
116
:It will help the Ministry of Health and
also to the health facilities because
117
:new patients will be pulled in because
I have gone to the community with my
118
:experience with showing my wound marks,
showing the mark to the community.
119
:As I was speaking now, we got more
than 15 persons, 20 persons that
120
:have, because of my influence or
because of my story sharing with
121
:them, they are coming for treatment.
122
:So those are things that I do.
123
:And that is what I need.
124
:I need support from other partners to,
to make me a ambassador for persons
125
:affected in my country, so that I
can help to eliminate NTDs globally.
126
:Kerry Millington: You are so
positive and a wonderful role model.
127
:Thank you so much for sharing that
journey of how you became an advocate..
128
:Maurine, What have you found
worked well in communicating what
129
:you need and the needs of others?
130
:Maurine Murenga: For us to communicate
our needs and the needs of others.
131
:It took a lot of different interventions.
132
:It depended on the context.
133
:There are times when dialogue helped.
134
:There are times when we needed to
really demonstrate and fight back.
135
:Um, what we call resistance because when
our health systems cannot manage the
136
:number of people that need services, they
tend to go into a motion of burying the
137
:head in the sand or being very defensive.
138
:And so it takes a lot of pushback,
a lot of fighting, for us to be able
139
:to really communicate the needs of
the people and the importance of
140
:ensuring that we are saving lives.
141
:So we had, um, we had moments
where we demonstrated.
142
:We had moments where we got
into trouble with authorities.
143
:We also had moments where we were able
to just have dialogue with decision
144
:makers and get our voices heard.
145
:So what I would say it was a
mixture of interventions, um,
146
:that worked, but we always started
with an opportunity for dialogue.
147
:If that didn't work, then we
would take it to the next level.
148
:Kim Ozano: Okay, and Emmanuel, over the
last year, you've been speaking with
149
:ministers and lots of important people.
150
:Were you nervous at first and what
helped you to become more confident?
151
:Emmanuel Zaizay: So I was, I was
nervous at first, my first time
152
:meeting with deputy ministers, uh,
meeting with former ministers, that
153
:was at the Murex Plaza, where REDRESS
had a intervention meeting, where we
154
:met with those, those hierarchies.
155
:I found it difficult, but the second
time meeting where we were able to meet
156
:with, with the NTD director, Karsor
Kollie, things became easier because it
157
:was not my first time and I overcome it.
158
:I imitated what people were
doing and I did the same thing.
159
:While it's true, I have now been
out of school for more than nine
160
:years because of my condition.
161
:So, speaking in front of a
group has been a challenge.
162
:But later, after some time, I overcome it.
163
:And I came, I came to get used to it.
164
:And after that, I'm
getting flexible with them.
165
:Kim Ozano: I just wonder from a
personal perspective, being an
166
:advocate is obviously a very personal,
very emotional, um, role to have.
167
:How have you balanced this yourself
with your desire to make change
168
:and your own personal needs?
169
:Maurine Murenga: As an advocate,
internally, sometimes I give up
170
:many times, but then I reflect and
I say, well, giving up will not
171
:take me to where we want to go.
172
:And so you put yourself out there.
173
:The life of an advocate is met with a
lot of, like I said, resistance, and some
174
:of our health systems are structured to
look at advocates like people who are
175
:critics, who mean to criticise and bring
down the efforts that have been made.
176
:Um, I can also say that, uh, because of
some of the things we faced, especially
177
:dealing with the HIV and stigma and people
dying, there was a lot of, uh, violent
178
:moments, or there was a lot of times when
advocates became very violent, and we took
179
:to the streets many times than we took
to the boardrooms to have discussions.
180
:So I think there's lots of lessons that we
have learned in terms of balancing between
181
:pushing, negotiating, um, influencing.
182
:And so there's always a need for a
balance, but I would say that as an
183
:advocate, I have created as many enemies
as I've created friends, and it takes
184
:a lot of thick skin to survive some
of the backlashes we get as advocates.
185
:I have been cyberbullied.
186
:My kids have been cyberbullied.
187
:Um, some wrong information about me
has been put out there, and all this is
188
:because of my engagement in advocacy.
189
:So I would say that real, real advocacy
is not for the faint hearted, but if
190
:you you need to get where you need to
get, then you have to do what it takes.
191
:So, real advocates are never compromised.
192
:We are very dedicated and we
always look at the positive side
193
:from our minds we always see the
light at the end of the tunnel.
194
:So we work so hard to get through
this tunnel, regardless of the
195
:many challenges that we get.
196
:It is a very thankless space,
but again, it's very satisfying.
197
:When you see people's lives getting
better, when your own life gets
198
:better, then you, you see the fruits
of the advocacy and you enjoy them.
199
:Kim Ozano: I think that really
helps us to understand the context
200
:you're working in and also the
challenges of being an advocate.
201
:Do you think that researchers, decision
makers and implementers need to consider
202
:safeguarding and making safe spaces for
participation of people like yourself?
203
:Maurine Murenga: I definitely think,
um, researchers, programmers, need
204
:to have spaces for people like me.
205
:A story is told of, um, it's not a story.
206
:It's actually an experience of
when we were developing the post
207
:exposure, prophylaxis prep, oral prep.
208
:And there was a study, in Kenya, to roll
out oral prep among the sex workers.
209
:So because they were not engaged in
the research, they were not engaged in
210
:designing the programme, we just saw the
final commodity that had been brought
211
:and we had mobilised them for enrolling.
212
:A lot of work went to prepare the project
for enrollment of the sex workers.
213
:Everything was put in place.
214
:All the procedures and processes
were followed and then the
215
:day of the launch came.
216
:And they were very excited about oral
prep, so they came in big numbers.
217
:But when they came, the only
challenge they had with the whole
218
:process was the color of the pill.
219
:The pill was blue, and they had a problem
with the color of the pill because there
220
:was some drugs that were used to drug
people that were also blue in color.
221
:And when sex workers were found with these
blue pills, they would be beaten, because
222
:it was assumed that they were going to
drug their clients and steal from them.
223
:So the color of the pill alone
aborted the whole process.
224
:So we could not continue
with the enrollment.
225
:They told us, well, if you
change the color to white or
226
:pink or any other, please let us
know, we will come and enroll.
227
:So, engagement is very, very critical.
228
:It helps us shape, it helps us design
programmes that are people centered,
229
:that will work for the people.
230
:So the voice people like I bring to
the table is just to guide the process.
231
:We are a very critical component
of the design, the research, the
232
:programming, um, it is very, very
critical that our voice is there so
233
:that we are shaping the process to
succeed, because we know what works.
234
:Kim Ozano: Maurine thank you
so much for these insights.
235
:I think you've raised some very important
issues that, you know, there are
236
:challenges, but the rewards are strong.
237
:We need to think about safeguarding.
238
:We need to think about spaces
for people to participate.
239
:So, if you were to give advice, Emmanuel,
to someone who is like yourself, affected
240
:by an NTD, but wanted to become an
advocate, what advice would you give them?
241
:Emmanuel Zaizay: My
advice is is to be strong.
242
:If you got means to go to school,
we could share with you to sustain
243
:yourself, to learn, to come
back and help persons affected.
244
:And to help your community and to
work along with a health system
245
:in a country or in your community.
246
:Kim Ozano: Maurine, what advice do
you have for both people who want to
247
:become advocates to make changes in
health diplomacy spaces, and also for
248
:researchers and programmers so that
they can make sure people like you have
249
:the space they need to make change.
250
:Maurine Murenga: My advice
to advocates and activists is
251
:that they should be informed.
252
:Um, knowledge is power and one of
the things that makes it successful
253
:in this field is that when you have
your knowledge and your facts right.
254
:Collaboration and
networking is also very key.
255
:There's, there's power in more.
256
:We are stronger together
than we are apart.
257
:So collaboration is important, and
we need resources to ensure that
258
:these networks are strengthened.
259
:There's also the component of being
strategic which I talked about, to know
260
:when to have a dialogue to know when
to get a bit more action, especially
261
:when you want to do demonstrations
to know when to be persuasive,
262
:to know when to have trade offs.
263
:So you really need to be strategic
in how you approach advocacy.
264
:And then the most powerful thing
we have as advocates is our voice.
265
:So we always say that, use your voice
with every opportunity you get, whether
266
:it is a meeting talking about male
circumcision and your interest is
267
:preventing mother to child transmission.
268
:Just find a way of getting it in there!
269
:That's one of the strategies that we have
found very successful using our voice and
270
:ensuring that we are getting into those
spaces where those decisions are being
271
:made and participating meaningfully.
272
:Kerry Millington: I don't think
it's just researchers that are able
273
:to provide those opportunities,
it's all the stakeholders, and it's
274
:forming those connections, trusted
relationships with the stakeholders.
275
:So when those opportunities arise
to engage with policymakers or to
276
:engage with politicians, you can
bring the voices of the community to
277
:them for them to understand through
pictures, through words, through
278
:discussions, the challenges that
people affected by these diseases face.
279
:Maurine Murenga: Another one thing
that I found very satisfactory is
280
:about empowering others, because
advocacy is not just about one's
281
:voice, it is about empowering
others to find their voices too.
282
:So encouraging people affected by
the issues to advocate and share
283
:their stories and experiences
amplifies what we are doing.
284
:So that is another critical, uh, thing.
285
:And then it's about celebrating victories.
286
:We get a lot of challenges sometimes
and we forget to share our victories.
287
:One day someone told me that every
time they give us a document to review,
288
:we always find the negative things.
289
:We never comment on the
positives in that document.
290
:Uh, so I think celebrating victories, big
or small, um, is, is, is really important.
291
:And recognising each other, the
little progress or the, the,
292
:whatever, or the milestones we
have made, fuels that motivation
293
:to continue in fighting for change.
294
:So...
295
:Always remember to
celebrate the milestones.
296
:Another one is about self care.
297
:I say, I shared some of the challenges
that we experience as advocates.
298
:So the self care is
really, really critical.
299
:It can be very emotionally draining this
space and, and mentally draining as well.
300
:So taking care of ourselves,
prioritising self care is very critical.
301
:I learned that later, but it has really
been helpful because nowadays I find time
302
:for self care and also having an ability
or a network that can support fellow
303
:activists to support fellow advocates,
um, so that we are not having burnouts.
304
:And then, um, the issue around resilience.
305
:It's never, like, a walk in the park.
306
:Um, it's not always gonna be easy.
307
:But resilience is very, uh, important.
308
:Setbacks are inevitable, but that
shouldn't really kill the spirit of
309
:advocating for what we really believe in.
310
:So, we have learned to
learn from failures.
311
:To adapt to new strategies, keep
pushing forward and remembering
312
:that change takes time.
313
:Our perseverance is important in ensuring
that we make a difference in the long run.
314
:Um, so, for scientists and programmers,
we may not have the same skill set,
315
:but simplicity goes a long way when we
attend your meetings and your forums
316
:and your, uh, spaces, making it simpler
for us to be able to understand helps
317
:us to contribute more meaningfully.
318
:So sometimes the science, science is
too much and, and we find ourselves
319
:lost in the process and then,
uh, you don't get a lot from us.
320
:So I think, uh, for that
is about simplicity.
321
:It's about trusting us, trusting our
data, trusting what we tell you about
322
:what works and what doesn't work.
323
:Kerry Millington: I think it's really
key to maintain that energy, both
324
:through the good and bad times.
325
:And you talk, Maurine, about finding
the opportunity, every opportunity you
326
:can to give your voice, but I think we
also have to find the opportunity to
327
:make sure that voice is heard as well.
328
:You know, we're very much trying to
work towards that with the researchers
329
:to have that exchange of ideas that can
be understood from both perspectives
330
:to ensure we work effectively together.
331
:Because, as you said, we all have the
same common goal, which is to end TB.
332
:And if we can do that better, then we
will achieve this quicker for everybody.
333
:Kim Ozano: Thank you
so much to our guests.
334
:I've learned so much today and
it's really clear that we as
335
:researchers have a lot to consider.
336
:We need to understand that it's our
responsibility to provide opportunities
337
:for advocates to develop soft and hard
skills so that they feel confident
338
:and comfortable communicating the
needs of the communities they are
339
:representing in different spaces.
340
:Don't forget to check out the previous
episode, which is all about health
341
:diplomacy spaces from the Center
for Health System Strengthening.
342
:And hit that subscribe button
now so you can get our next
343
:episode as soon as it's available.
344
:Thank you for now and have a good day.
345
:Bye bye
