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EP24 Noncommunicable Disease (NCD) Research in Sub-Saharan Africa with Temitope Ojo and Andrew Tusubira
Deborah Onakomaiya: Hey, guys, and welcome to another episode of I AM GPH. I am your host, Deborah Onakomaiya. On today's episode, we have Andrew Tusubira, who's a master's of public health graduate from the Makerere University School of Public Health in Kampala, Uganda. Between 2016 and '17, Andrew was a Doris Duke International Clinical Research Fellow working with the Uganda Initiative for Integrated Management of Non-Communicable Diseases. Through this fellowship, Andrew was able to complete a qualitative methods research study, aiming to explore patient's access to medicines used to treat NCDs in public and private sector health facilities in Uganda. He's here today to talk about his experience and work in that area. Also on the show today is Temitope Ojo, who's a doctoral student at GPH. Prior to coming into the doctoral program, she spent three years as a clinical research assistant and fellow working on chronic kidney disease studies in Boston, Massachusetts and Abuja, Nigeria. She went on to receive her MPH in chronic disease epidemiology from Yale School of Public Health. Similar to Andrew, Temi's interests focus on NCDs in Sub-Saharan Africa, much more on cardiovascular disease management and the continuum of care in low resource settings. For her master's thesis, she conducted original research in peri-urban and rural Uganda to capture the knowledge and attitudes of community health volunteers towards non-communicable diseases. Her work in Uganda was recently published in December of 2017's issue of BioMed Central Public Health. Let's go to our conversation with them. All right. Welcome, guys. Thank you so much for being with us today.
Andrew Tusubira: Thank you, too.
Temitope Ojo: Thanks for having us.
Deborah Onakomaiya: Awesome. All right, so let's dive right in. So, for our listeners out there, can you just share a little bit about your background? What is your personal story? Who are you?
Andrew Tusubira: Thank you. I'm Andrew Tusubira from Uganda, and a public health practitioner at the moment. I've had a lot of work within public health. It's over a year since my graduation, and with ... Just before my graduation, I got an award of Doris Duke as a clinical research fellow, and through ... That was through last year I was practicing as a research fellow at Uganda Initiative for Integrated Management of Non-Communicable Diseases. Probably this is my story for and exactly why I started my research. It was mainly after ... within my master's course. We were posted to different fields, and so I found myself doing much into research. That's how my passion grew for research, basically, and my passion is now into working with public health, but into research, mainly, and informing policy.
Deborah Onakomaiya: How about for you, Temi?
Temitope Ojo: My background started with biochemistry. So, I actually have a biochemistry degree, undergraduate degree from Mount Holyoke College, and I minored in anthropology. Right after that, I went into clinical research for chronic kidney disease. So, you could say that's where the non-communicable diseases research kind of started out for me. I spent two years of clinical research at Tufts Medical Center in Boston, and I spent another year of clinical research for chronic kidney disease still in Nigeria. So, I did that for a year at the National Hospital in Abuja. It was actually while I was trying to get two clinical projects off the ground while I was at the National Hospital is really when I had the conversion into public health, because I felt like the system needed a much more preventive approach. Because usually at that stage when you're getting dialysis, it's terminal, and given a struggling health system structure, it was harder to have people manage their chronic conditions. So, I felt that need to get into public health to start ... to come in from the preventive side of things when it comes to chronic diseases. So, right now, I'm at NYU. I'm a doctoral student in the epidemiology department for the School of Global Public Health, but before that, I got my MPH at Yale University. Concentration still was chronic disease epidemiology. So, you can see there's been some consistency with chronic diseases for me, and it's all been interwoven with research for the past decade now, I would say.
Deborah Onakomaiya: And I mean, both of you guys have touched on chronic diseases, non-communicable diseases, as well as public health. Is there a personal story as to why you guys are so passionate about this full area of research? Are there a series of events? I know you touched on it a little bit, that made you guys want to focus on non-communicable diseases.
Andrew Tusubira: Personally, it's a series of events, because my work in research probably started three years ago. I started with maternal health, and I was doing much researching, issues dealing with neo-natals, mothers, pregnant women, family planning, things in line also with the reproductive health. With time, I started seeing a growing burden in the chronic disease in Uganda. As we continued to do more reading, we found out it's an area which has not been given enough research. There are many gaps which are still there, and more on the side of prevention because the medical side is doing the treatment, but the prevention beat is still lacking. Getting the award of ... I can say fully started my research work in non-communicable diseases with the award of the Doris Duke International Clinical Research Fellowship, where we were doing a study on access to medicines for persons living with diabetes or hypertension. So, that's where I started fully doing my research work in chronic diseases. So, it was just a series of events from internal health issues to NCDs. I didn't start fully with chronic disease. No, it came in later. Having identified this issue, and also getting the passion to like it, and then later, given an award for Doris Duke Clinical Research Fellow where I was funded, and I started doing my study in line with access to medicines to treat diseases, yes.
Deborah Onakomaiya: Mm-hmm (affirmative). Awesome.
Temitope Ojo: A lot of things Andrew says is something that has been mirrored in my own experience as well. I would say for me, really, I mean, like I said previously, I came in from the clinical side of things where you're measuring biomarkers of disease progression in chronic kidney disease, but you're only able to do that kind of research comfortably in a system that has resources for that. I could not, I know, even while I was working at Tufts, I couldn't help but think about how this could translate into a typical Sub-Saharan African healthcare system, because, I mean, I am Nigerian. I have family who are still in Nigeria. So, you can't help but think about, "Okay. Should they come, should they develop one of those chronic conditions, what are their chances of survival?" Because I saw management here, right, that I know they will not be able to get. So, I saw people here who can live with their diseases for years, right, but that wasn't something I could guarantee for anyone in my family or anyone back home, per se. After going back for a year and trying to get clinical, right, clinical chronic kidney disease research started in Nigeria, I came in contact with patients who were on dialysis, and it was just ... I would say it was heartbreaking just to see the required bare minimum recommended number of sessions they needed to come in for. A lot of patients couldn't make that because there were financial burdens to it. They were not being able to ... They also could not manage the side effects of dialysis, loss of job due to that, resources being sunk into it. So, it just, it made it very clear for me that, for a system like a healthcare system which is still struggling to build that capacity to manage chronic kidney disease, we kind of have to start the work early, much more like upstream, right, where we can mitigate the rate at which people get to terminal stages of chronic diseases, and it has to start early. I would say when I ... At least with that mindset, my personal statement, right, for my MPH, and after getting into Yale, while I was there, I would say the one thing that really convinced me that this was what I wanted to do, and this was why I pursued it, am pursuing it now at the doctoral level, was being able to actually, through UINCD, the organization that Andrew served with during his fellowship, through them, I was able to go to Uganda, right, and conduct a field research, just understanding how community health workers in Uganda, they are volunteers, so how the ... They are known as the village health teams. How these people are able to play a role in awareness and prevention for non-communicable diseases, right? So, in that sense, being involved in that field work first hand, I would say never exchange field work for anything, really. If you want to know what's on ground, if you want to have that first hand experience, you get to do field work, right? It was during that point that I knew I was convinced, in spite of the frustrations and the hoops and the bureaucracy, I was convinced this was something I wanted to pursue because it brings the problem closer to you when you're standing next to it, and not in some far off office or country, right?
Deborah Onakomaiya: In New York City.
Temitope Ojo: In New York City, exactly.
Deborah Onakomaiya: Reading about the statistics.
Temitope Ojo: Exactly.
Deborah Onakomaiya: Yeah.
Temitope Ojo: It's not just about the statistics, right? There are faces to those problems we are talking about on paper, so ...
Deborah Onakomaiya: I think you touched a little bit upon this, but in Sub-Saharan Africa, most of the campaigns are geared towards infectious diseases. HIV's a huge thing. Globally, NCDs are becoming much more popular in the region. Can you explain why has this focus shifted? I mean, there's still a lot of PEPFAR funding for HIV and whatnot, but even within that funding, people are beginning to shift towards NCDs. Why do you guys think that is?
Andrew Tusubira: When you go to the field and you see what has taken place, that's when you realize that this is a burden. My first day to carry out fieldwork with the fellowship I was on, I went to one of the hospitals in Kampala, which is the city. To my shock, by seven in the morning, the line for patients with diabetes was full, and they had nowhere ... Patients had nowhere to sit. It's my first time to ask ... It's when I ask myself, "Is this real?" On a clinic day, the patients don't have where to sit, and this is just one hospital in the city, and not all of them come to that place for care. So, it's not until that you go to the field and you ... That's when you realize there's actually, there is a need. The healthcare workers were complaining that they're exhausted. One healthcare worker told me, "I cannot see over 50 patients in one day." One person, 50 patients. Actually, over 50 patients a day, because in a day, I asked, "How many can you see?" "There are days where, a clinical day where I can see 80. There is a clinical day I have to see more than 100. So, it's like I can't even give care to them." So, that's when I realized that this, it is a burden. Back to your question, right now in ... I can say in Africa, there is a lot of change, and NCDs are also getting to a high prevalence. Not as before. Probably you can say there is an increasing presence of the risk factors. There is total changing in lifestyle. We are talking about dietary patterns. Before, used to be fresh foods. Nowadays, you find fast foods, packaged.
Deborah Onakomaiya: Yeah. See, even after that, even in Nigeria, KFC came there and people see it as a pride and a joy to ... which is ridiculous, because I am also from Nigeria, so ...
Andrew Tusubira: Yes. Actually, even in Uganda, we're having KFC now. When you look at the dietary patterns has actually affected even the children. You're talking about obesity among school going children. When you talk about the dietary lifestyle, physical inactivity is too high, and it was found to be common among those who were employed.
Deborah Onakomaiya: Mm-hmm (affirmative). And the funny part I think for me is the pictures they show of African kids. "Donate now," and then you see skinny kids. Now we're struggling with obesity. You see?
Andrew Tusubira: Yes. Yes. Very soon, it's going to be a big issue, a big public issue, especially in my country, which it has been noticed. Then also, when we look at the physical inactivity is too high, we are talking about urbanization, which is rapid, but of course, with less sensitization. So, when we look at these risk factors, which are predisposed in very many masses, and there is limited information about these diseases, very limited information. Then, the whole systems themselves are fragile. Handling these chronic diseases has not been part of our health system. So, it comes as a new thing, and everyone is still, as we are still grappling with the infectious diseases, this is something new which is coming. I was talking to someone recently in the Ministry of Health, and they were like, "It's actually going to be a higher burden economical because these are chronic diseases which need lifelong treatment, lifelong management, which our health system does not handle." You talked about the funding of the ... and that's more into the infectious diseases where these hope that someone can get cured, especially with things like malaria, diarrhea, but when it comes to someone having diabetes, cancer, this is lifelong. Kidney disease, this is a lifelong issue, lifelong condition, and the system is not able to handle some of these. So, this raised a big issue, and so many in the public health system have come to know that, actually, this is a big demand which is rising in Africa, especially in Uganda. It's an issue which very few are aware about. If you are to move out and you sensitize people about salt intake, they will ask you, "What do you mean?"
Deborah Onakomaiya: "I've been eating salt for the past 60 years." That's literally my dad's argument. "I've been eating this for 60 years. Why should I change my lifestyle?"
Temitope Ojo: Yep.
Deborah Onakomaiya: You see?
Andrew Tusubira: Yes.
Temitope Ojo: One thing that I would like to say to this, because Andrew, pretty much, you've touched on everything, risk factors and the changing socio-economic status, right? Another thing is, now that we're talking about PEPFAR, so you realize now that HIV is now much more of a chronic disease, right, less of an infectious disease. So, I feel like another way that we're gaining, NCDs are gaining attention, right, is because now you have people living with HIV who are developing chronic diseases. They're developing chronic conditions. They are having hypertension, cardiovascular disease, diabetes, right? One, because they're living longer, right? They can actually ... and we know aging, with aging comes risk factors and challenges with chronic conditions, right, but another thing being that, also, there are side effects of just being on ART, on the therapy, right? So, in order not to lose the progress that has been made all these years, right, through this ART campaign, PEPFAR, HIV, making HIV a chronic condition, of course they have to pay attention to NCDs, because now we have people living with HIV who are developing chronic conditions as well.
Deborah Onakomaiya: Yeah, yeah. That's ... thank you so much for that. It really brings it home as to how should we be looking at disease control and things like that. So, both of you mentioned the Doris Duke International Clinical Research Fellowship. So, for Andrew, you were working with them in Uganda for their initiative. Can you just tell us a little bit about your experience working there?
Andrew Tusubira: All right, yeah. First of all, before getting to the initiative, I was first given the award of a Doris Duke International Clinical Research Fellow as I was getting towards the end of my MPH in 2016. That's how I get into ... That became my site for the study which I was doing, where I was doing a study which was looking at access to medicines to treat NCDs at both public and private health facilities in Uganda. The fellowship was a pilot of its kind. It was a pilot training model, meaning I was trained with a fellow from the Yale University School of Medicine. So, we were doing the same study, but with different methods. The student from Yale University, fellow, she was doing the quantitative bit of the study. I was doing the qualitative bit of the study, but the same focus. We were both understanding the issue in prescription and dispensing of medicines. So, with me, I took the wing of qualitative and I basically looked at what are the barriers and facilitators to accessing medicines at both public and private facilities. Yeah, it was a wonderful fellowship. My focus was more into the qualitative, but before my real focus, the training program alone, the training model was good. I was the first recipient, so I didn't have anyone to look up to, but it was an experience of its own for me. I had learned a lot from my train, and she also, I'm sure, learned a lot from me. Besides, we were doing so much in the field. We'd got different field sites. Besides the work we did, the actual work of my research was also good because I learned a lot. It taught me to transform my fear of qualitative research into practice, where from designing to working on the ethical issues, with the IRB, and working on the comments, back to now going to the field, designing the tools, pretesting, going out to different facilities, doing informant interviews, then transcribing, doing analysis. It was my first time to actually use ATLAS for over 10 or six transcripts alone, and then up to the end of writing the results. So, basically, I also learned academically with the work and getting the skill of qualitative. That's how great it was for me as a fellowship. Then, also, it gave me this actual passion for NCDs. I started realizing where I can give my input in terms of my work, policy, and even what gaps are still existing in line with the NCD world. Yeah, that's what I can say about the fellowship.
Deborah Onakomaiya: I would say one good thing about qualitative research is that it actually puts a face to the work. What exactly is the Doris Duke International Fellowship or Clinic Award?
Andrew Tusubira: This is an international clinical research fellowship. Me, I was within Yale University, but I know it's under the Doris Duke Charitable Foundation. The foundation supports around 10 universities in the United States, and one of the 10, either 10 or eight, but one of them is Yale University, and at the Yale School of Medicine. So, that was my host institution. So, through Yale University as a training model, yeah, I came in as a trainee. The fellowship is strictly for people within the United States, but this came as a model. It was actually pilot training model. So, through that, they identified one student from ... They are completing a master's of public health, a student who takes on the qualitative side and augment the quantitative from the medical world. So, it was, I think, a search, and I was quickly identified. A short interview, and then I got enrolled on the program. So, the fellowship is supported by the Doris Duke Foundation, Charitable Foundation. So, through this foundation, you're given money to build such work, and also a stipend. Then, at the same time, there is mentorship fellowship. So, I had the mentor from Yale University, Professor Schwartz, Jeremy. Then, in Uganda, I also had the mentor, Dr. Christine Nalwadda from School of Public Health. So, I was working with two mentors, but at the same time, at the host institution, that's UNCD, there is a director, Dr. Ann. She was my direct supervisor at the field, at the site. So, she could know everything taking place. I would report to her. Whatsoever would take place, we would have Skype calls, or different calls with Jeremy and with my supervisors, or ... That's UNCD, and then my mentor at School of Public Health. So, it was a mentored ... It's a mentored fellowship, and it's a good fellowship. At the end of the year, we had to present our findings and results last year. In June, we presented that at one of the conferences which was held here. I think that's specifically what the fellowship's about.
Deborah Onakomaiya: Mm-hmm (affirmative). Awesome, and you, Temi, worked a little bit in Uganda. Can you tell us a little bit about your experience? Yeah.
Temitope Ojo: I did. So, I spent three months in Uganda. I would say amazing, amazing time. First off, the Ugandan people are amazing people to work with.
Andrew Tusubira: Thank you.
Temitope Ojo: And I mean it because, honestly, I'd never been to Uganda. I designed my study not in Uganda, right? I designed it in New Haven at Yale, so I was out of context on a lot of things. So, this was even after my IRB was approved for Yale University. I still needed to get an approval for the Makerere's School of Public Health. So, over there, I had a preceptor, Dr. David Guwatudde. So, he was my preceptor and kind of my close supervisor to make sure I was meeting my goals. You already mentioned some of the people that I actually had a wonderful encounter with. So, Dr. Ann Akiteng, she was just amazing. Very resourceful woman. Christine Nalwadda, yes. She helped me out with shadowing some of the studies in the Uganda Mayuge health district, where I actually, where I eventually collected my data. So, she allowed me to shadow another study that they were doing for diabetes called Smartudi. So, for me, honestly, I will tell you now. The hoops, and this is why I emphasized earlier on why field work matters, is because you'll get the context to the problem. There might be a problem. We are saying, overall, yeah. There's a problem of non-communicable diseases, but it looks ... It carries different bodies when you go to different locations. It's not the same as you would find at a Boston. It's not going to be the same where you find it in Kampala, right? You kind of have to apply the context of Kampala geographically, economically, right, what the population distribution is like, occupation. All those things came to life for me when I was trying to get my IRB approved. It took me another six weeks to get that done, and it was a full approval process. I had to present in person to the entire board and convince them that, indeed, I had taken into account the context specific features for me to be able to actually carry out research that will be relevant to the people, and that's-
Deborah Onakomaiya: Mm-hmm (affirmative). I don't know if you mentioned this, but what was the research on in Uganda?
Temitope Ojo: Wait. So, I did mention that. So, that is ... It's titled the Knowledge and Attitudes of Community Health Workers, Known As Village Health Teams, Towards Non-Communicable Diseases in Uganda, Mayuge District Uganda. So, I actually ... The paper got published.
Deborah Onakomaiya: Oh, congratulations.
Temitope Ojo: Thank you.
Deborah Onakomaiya: Watch out.
Temitope Ojo: It's in the BMC Public Health. It was published December 2017. I am the first author, so look for Temitope. T. Ojo, O-J-O. Pretty much, it was a mixed methods paper where I conducted a knowledge, attitudes, and perceptions survey, right, amongst the village health teams in Uganda Mayuge District. So, it's known as the IMHDSS, and I hope it's still what it is. Then I did the knowledge, attitudes, and practices survey, and also conducted focus group discussions with the village health team members. Pretty much, it was for us to understand, to kind of ... because we're looking at community health volunteers and work as a potential resource for promoting awareness, right, and prevention for NCDs, because this is something they already do for infectious diseases, for infant and maternal child health. That is what they are trained for, but wanted to know, would there be capacity for them to also contribute towards non-communicable diseases? The interesting thing about Uganda is that the village health teams are the first contact, right? They're the first line health system structure that people come in contact with, right, especially at the community level before they, say, come in contact with a community health center, or they go to a regional, or they go to a national hospital. That's the way the health structure is designed, the Uganda National Health System. Now, this might not exactly be happening as it is, but they are designed to be that first line. So, we feel like if we are going after preventive work for NCDs, you kind of want to go through the first line because they're the ones who have this direct access to the people, right? We wanted to know, are they, as village health teams, are they even aware about the burden of non-communicable diseases? Do they see it? Do they encounter it when they go out there doing what they're trained for, which is infectious diseases, infant and child and maternal health? We wanted to understand. Are you seeing those things? Are you noticing it? If you're noticing it, or if someone talks to you about it, what do you do? What do you do? What would you want to be able to do, right? Because part of the data that we got is this feeling of helplessness, right, where they would say, "We do not know enough about it to even talk to people about it, but we know it's a problem." So, they're volunteers, right? They're lay people who have been trained-
Deborah Onakomaiya: Trained, yeah.
Temitope Ojo: Right, to at least carry out this basic health mobilization, sensitization work in the communities, but they said, "We really want to do something about it, because we know it's a problem." It's personal problems to them too. Some people say, "Oh, my grandmother, diabetes. My grandmother died from diabetes. My mother suffers from hypertension," or, "I went to this neighbor's house the other day and they were telling me all about their last hospital visit and how they've been diagnosed with hypertension, and they're not really sure what to do." So, community health volunteers are asking. They were like, "We would need information. We would need to be trained. We want to be equipped with education to at least tell people to know how to accurately inform people about what next, what to do next," right? There was also the sense of they wanted this visible partnership with the medical community. They wanted the medical community to meet them where they are, right? "Come to our communities and let's do something together to engage people, to get them talking about NCDs," right? Because there is this feeling of, when I go to the health center, I have to wait in line. Sometimes they're rude to me, or they ... I don't feel like they treat me right, or I'm afraid to talk to them. So, there is also the sense of meeting people where they are with their problems, which was reflected in the paper that we wrote. So, that was pretty much my project, I would say. I mean, there were times. Comes with a frustration of, "Oh why, God? Why are things not moving along quickly?" But I would not, I really would not trade in that experience for anything because I have to say, it's one of the grounding reasons why I'm here pursuing a doctoral degree. It just made it very clear that this is how research should be done, right, and this is why it should be done. You need to do this kind of research to get that message and to get the story right, because it's so important to get the story right.
Deborah Onakomaiya: Yeah, and I mean, she talked a lot about a lot of the things that you found out from her research. For Andrew, what were some preliminary information that you were able to get from your research while there?
Andrew Tusubira: Basically, my study was just in line, was focusing on, once again, what are the barriers and facilitators to accessing medicines to treat NCDs? Our concentration was on patients living with diabetes and hypertension. Basically, since it was qualitative, we had four main thematic issues which came out. The first one was the issue of low stock of medicines, and the quality of medicines. This was mainly at the public facilities. Public health facilities are the ones which are run by the government. We found that most of the medicines which are mainly to treat these diseases are often out of stock. So, patients often reported, well, they are reporting not finding their medicines, but when they return for refills, they get partial doses of the medicines. Then there was another specific issue which came out. It was the issue of equality with certain brands. This was basically among patients who are on insulin. They were complaining of a certain brand of insulin from a given country, which it came out that the insulin which, from this country, the brand isn't that effective, and it has so many side effects. In that, even the healthcare workers themselves accepted. They said, "We've had multiple complaints." The main issue which shocked me, it was across all the study sites. We went to different sites, maybe to inform you, went to sight-see in the Northern Uganda, especially Gulu. Went to Western Uganda, let's say in Fort Portal and Mbarara, in Kabarole District. Went to Eastern Uganda, Jinja District. Went Central, both Kampala and Entebbe, but this complaint was cutting across. It was cutting across, and was shocked. So, when we went on to ask actual study informants, these were the healthcare workers themselves, they told us, "It's true. These people, they complain. Actually, wait, they even give themselves sometimes overdose because they tell us that it does not work, so they keep on giving themselves more." Then we're like, "Why do you still use it?" It's a big issue which they couldn't easily give me the answer, because the medicines they receive are supplied by the national medical store, so I couldn't ... Also, we need to go beyond that. We need to go to ask the persons in that department or in that association, but what we know is that is a big issue which has to be worked upon. It's a big policy issue, because if you really hear what the patients are talking about, they were using it as a last resort, or they use it when the issue has really escalated and they feel it's close to death. Then, another issue, maybe we ... which I can bring, another thematic area we found which was the cost.
Deborah Onakomaiya: Yeah, that's always a huge one. Yeah, yeah.
Andrew Tusubira: So, it's huge, and it was cutting, of course, even ... especially in the private, but also in the public because there is low stock. So, patients have been always told, "Go and buy what has been prescribed." Actually, the quantitative shows that, actually, what is prescribed is far below what is dispensed, because in Uganda, there is not out of pocket. They don't pay, so medicines are meant to be given to patients freely, but it's ... Most patients don't receive, and they're told to go and buy it. Most of them tell you, "We failed to get." Then, at the private facilities, of course they are more expensive. So, those were how far it would get. However, the private, we found that there was a class of people who were on insurance. So, they're basically, that may be because of where they work from. It's basically work. So, that insurance coverage does not always go beyond a certain amount, so they are not able to receive certain medicines which are not in their insurance allocation. So, those ones also left without some of their medicines being received. Basically, that was more into the issue of cost. Maybe another thing was the transportation for patients. We found out that patients come from very far, different districts. They mainly prefer hospitals. They don't go to these lower health center levels. So, you find the patient moving between two to three districts to come and get medication. Probably another issue is because at these health facilities, there are physicians, so they could probably give better prescription for their medicines. It was basically that. So, some don't have transport to take them, to bring them back for refills. So, you find a patient comes this today. Their next appointment is next month. They come after three months. Then you're like, "What happened?" Like, "I didn't have money to be transported to this place." That issue was individual patient behavior. This one was really interesting. Patients themselves, this is their own behavior. First of all, was the issue of health seeking behavior. Patients often would ... Some patients would come because of something has triggered them to come for work, I mean, for medicines. If a patient is okay, they don't appear, but when they feel something has triggered, or if it's malaria, then they will say, "Oh, I have to go for my medicines." Then there are also the class of patients who move from one facility to another, carrying out multiple consultations and getting confused over the medicines to take. That was a big issue. They come and find a ... maybe the physician. They tell the physician, "I've been taking these medicines. Is it okay? They change. They went to the other clinic and they told me to take these medicines. They are cheaper, or they are better." So, it became an issue. They get confused. You find the patient telling you, "I have like three prescriptions now. I don't know which one to take."
Deborah Onakomaiya: Wow.
Andrew Tusubira: Yes.
Deborah Onakomaiya: It's open anarchy.
Andrew Tusubira: Yeah. Then I think was the preference of herbal medications. You have, basically, it as a supplement, or they've used them as an alternative, or to supplement. They also believe that herbal medications are really important. There is this belief that anything bitter can help reduce sugar levels. So, anything bitter, and if I don't get medicines, as long as I get something bitter. So, for those who take long without coming, they are on bitter herbs or bitter vegetables. Anything bitter, they believe their sugars are getting lower. Then, mainly, the first thing was the issue of service delivery. There's a difference in service delivery between the public and the private, totally different. Private, there is a lot of flexibility, which was a big facilitator at the private. The flexibility is I can meet a patient, or a patient can meet the physician any time of the day, or any day of the week, while in the public facilities, the care of hypertension and diabetes is within specific clinics, and the only clinic there is. So, if a hospital A clinic day is Monday, that's when they would see those patients. Beyond Monday, you will even find that care point having something totally different. Because where I was, and I was told, "This is the abortion unit, actually, but on Tuesday, we use it for patients with diabetes and hypertension." The main issue is within ... because of this kind of structure, they already bother on accessing medicines. That's where issues come in of high patient volume, because all patients are coming on one day, and so these long queues, so much frustration, even medicines alone are not enough. So, someone is frustrated not even to come back by 6:00 AM in the morning, which is more dark in Uganda. Patients already flocking the place. Healthcare workers, they turn up at 9:00, and the whole place is flooded with patients. Healthcare workers would complain that by noon, they are tired. By noon, you have seen over 40 patients, and there's still more on the line waiting. So, by that time, they've even lost it. They actually themselves told us that they don't give quality care. So, we found that such issues are themselves impairing accessing medicines because of the structure. Hospital A, it's only on this day that we shall take care of patients with diabetes. Now, you miss that appointment, you wait for the next week. You miss that one, you still wait for another week. Then also, of course, there's the issue of absenteeism of healthcare workers. So, if the healthcare worker comes late at noon, he will see what a few he can see, and then he disappears. So, she disappears, and that's it. However, there is something interesting. At a few public health facilities, we found there exists diabetes patient groups. These are patient driven groups or associations. They are patient. They are more informal. Patients organized themselves, and they have a leader, the association leader, because they called it an association and a committee, which runs the whole association. These patients, these leaders are also patients within, but most cases, they come out as patients with a concern. So, they are more informal. One person comes out and leads the rest. So, I'd say few public facilities, they were accepted to function. At others, they existed for a short while, and they were stopped by the administration of those health facilities. So, in most cases, these associations, what we found, they had work in the different ways, the different models with which they work. Some are integrated within the healthcare system, like of the facility, in that that administration has time to talk to them, while others, they operate totally different, but they accept it work. One important thing is the influence, the way care is taking place, especially for patients with diabetes. They try so much to mitigate the problem of inadequate supply of medicines. It is something which we feel we should investigate further.
Deborah Onakomaiya: Wow. It sounds like you had so many ... I mean, I feel like both of your research kind of complements each other. You were talking community health workers. You were talking to patients. I think for our listeners, a lot of students are interested in this type of work. A lot of people get into public health. They want to go into the field. Both of you guys have actually worked in the field. My next question would be, what should students know about working in the field, especially in the context of Sub-Saharan Africa? Just to be clear, obviously, Uganda is different from Kenya, which is different from Nigeria. So, obviously, whatever advice you're giving is specific to your own experiences, but what should students know about conducting research within this context? I know you've mentioned challenges with IRB, but what are cultural things that people should be aware of? What are things that students particularly should do, or students who may not even look like you? Type of context, what should they be aware of?
Temitope Ojo: That I know favored me greatly was the fact that I used the people around me. I saw them as resources. So, that's important because you might have the idea that I came up with this project, and it's to advance the health of these people that you're going to work with, or that community you're going into, but honestly, you are going there blind. If you did not grow up there, if you've never lived there, you've never worked there, you really are going in there blind, because what you find on ground is not the kind of data you collected over PubMed, right, in terms of global health. It's not the same. Trust me. It's not the same. So, you have to see the community you're going to meet. You have to see them as a resource to you, to the work you're about to do. What that takes, it takes humility. It takes an open mind, right? You should be ready to absorb what they have to offer, because trust me, they can either make or break your research, right, because you need to find a way for them to also trust that you are coming in with good intentions. You might think it's obvious, but it really isn't. Sadly, the experience for a lot of communities, even here in the United States that research has been done in, and also in Sub-Saharan Africa, is we've had these issues of helicopter research, right, where researchers come in. They do their work. They collect their data, and they just leave, right? They leave with the results they want, right, but not so much left for the communities where they've done work in. That's something I feel like every student, public health student going out there for field work should think about the ethics of field work, is really to have this mutual respect for the community. You're going to see them as a resource and not as victims, honestly. Do not be afraid, right, to ask them questions. Do not think there's nothing you can't learn from them because you would open up ... When you are open and when you approach them, right, you are going to open up a flood gate of resources unto yourself. You will be amazed at how much you can accomplish within a limited time, and within a limited budget, because budget was a big thing for me, and yes. Honestly, working with my community in Uganda, like from Kampala to Iganga, everything, from the people who hosted me to the guest house I stayed in while I was doing the field work. The boda boda, everybody, right? All those people have something to offer, and you have to go in with that sense that they have something to offer, yeah.
Deborah Onakomaiya: Any advice for students who want to work in this field?
Andrew Tusubira: I think Temi has said it all, but maybe just to add on what she said, she talked about being flexible. It's one thing, at least for the times I've been in Uganda and seen researchers come from different countries. The issue of flexibility is important because you come with a different mindset, and actually, what is on ground is totally different. Totally different. So, student comes, and maybe he or she expects some kind of means of transport, and it's totally different. You're telling them this is a taxi. It's sort of different. Here we talk about trains. You say you're going to talk about taxis, and going to tell them, "Please try to restrict the boda bodas." There is that cultural ... Also, the issue of culture shock is there, but the main thing is the flexibility, which is needed. She also talked about IRB. It becomes a recent big issue. Basically one, I think one of the reasons why it's an issue, I was recently being in a study which was looking at HTN within HIV. One of the questions which someone asked me from an IRB was, "Are we sure these results are going to benefit us, or you're going just to take them away?" You get it? It's something which is important. So, when you're looking at IRB, ask yourself, "How of benefit am I going to be to the country I'm going? How benefit are these results going to be with this country?" Because they will be not of your own justification for this study if they don't see the context where it going benefit from those results. So, that's always the first thing. IRB's always the big issue if that is not thought about. The other thing is, then, be open minded. Of course, humility's important. Ask where you need direction, but also, there is also need for them to have a contact person, especially a person who has been in research to hope. If the contact person has also not been in research and they are learning, it's going to be a to and fro. You ask, they ask. Then they also go and find out what is true, which is not right, but basically, Temi has said most of it.
Deborah Onakomaiya: Yeah. Thank you guys so much for being here. I think my final question today is what's next for you guys? What's next for you in public health, where if we come back five years and have another podcast, what's Andrew going to be doing? What's Temi going to be doing? Will you-
Temitope Ojo: In the next five years?
Deborah Onakomaiya: Yeah.
Temitope Ojo: Well, I hope I'll be done with my PhD at that point.
Deborah Onakomaiya: Yeah.
Temitope Ojo: But yeah. Well, for me, what's next? What's next is where I am right now, what I'm doing right now, which is cardiovascular disease epidemiology, but I'm going in more from the implementation science angle of things. Definitely. It's exciting for me to talk about implementation science, and for me ... When you hear implementation, you think, yeah, the process of getting something done, but it needs to be a science. For me, the science is really the underlying thing about implementation science because there has to be a method to the way things are done. It has to be systematic. You have to collect evidence-based information that you know you can replicate. You have to have done the work, to the observation and the experimentation of whatever implementation strategies you're going to use, right? The reason why implementation really matters is because it's the way you carry out your interventions. It could make or break your intervention, right? If you say, "Oh, we've had intervention success. You've had treatment success," are you sure? Are you sure it can be replicated in country B if you take the same intervention over there? That is where implementation science comes in. That's where you need to measure your implementation science outcomes because, yeah, you might have an intervention that works, but you might have an implementation process that does not work, right? So, it could either be an implementation problem, or it could be intervention problem. You need to be looking at all this on a spectrum. Time passes. It's a timeline. It's a spectrum of things that gets you to the final goal of actually having an intervention work or not. So, for me, it's exciting now to see my work, or to be looking at the work I'm doing on cardiovascular disease epidemiology through implementation science, because I feel like there's been a lot of waste over the past decades just due to poor implementation of intervention and so much resources. Limited resources to have gone into a lot of projects that do not get scaled up because of the implementation side of things failed. So, yeah, pretty much for me, that is what I will be doing for the next four plus years or more, at least until I'm done with the doctoral program.
Deborah Onakomaiya: Yeah. How about for you, Andrew? What's next?
Andrew Tusubira: Yeah, she talked about a very interesting field which I like, and I hope to soon join, implementation science and implementation research. Yes, I look at myself building more my career, especially in line with research and epidemiology. Yes, I talked about qualitative, but my big interest, especially from my public health studies I tracked, I may jump more into epi and epidemiology and biostatistics. So I, in research, getting better, building my career in line with that, and in research, especially with NCDs. Yeah, I also look ahead to doing another study soon, or when I get the opportunity. It is one of the things which I believe would be more especially in the line of research and in line with how I can inform policy and what can I do. She talked about implementation research, and I like it so much because of the way ... The first time I was introduced to it, I got shocked. I was like, "Oh, sad things happen in this world where we will use evidence based." We use that evidence based to either promote or integrate it within the different programs, or even to evaluate programs. So, I like it so much, and I would like to build more in line with that, especially in line with NCDs as we talked about, where we need ... At this point, we need cost effective, patient centered interventions which can help, because the systems are not that strong. The health systems are not strong to keep both the infectious and non-infectious disease on track. So, one of the things which I think could easily form policy and health practice is implementation science or research in line with NCDs. That's where I hope will be in the five years. I will be, yes.
Deborah Onakomaiya: Yeah, wow. Thank you, guys-
Temitope Ojo: Definitely.
Deborah Onakomaiya: ... so much for coming on our show today. Thank you so much for sharing your work with us. We're so glad to have you.
Temitope Ojo: Thank you. Thank you for having us.
Andrew Tusubira: Thank you.