Sandra Alba, PhD, is an epidemiologist at KIT Royal Tropical Institute with a background in medical statistics. She has 15 years’ experience in the application of statistical and epidemiological methods to evaluate public health programs primarily low- and middle-income countries.
At KIT Sandra has specialized in the application of statistical and epidemiological methods M&E and impact evaluations within multidisciplinary teams and in collaboration with local partners in Africa and Asia. Her areas of expertise include child health, malaria, WASH and TB.
Episode Description
The work of health researchers is vitally important to the safety and well-being of people around the world, with the COVID-19 crisis making that all too clear. However, health researchers are facing a crisis of their own, a crisis of trust. It’s fueled partly by the proliferation of social media, the politicization of data, and the reluctance of some researchers to discuss their work. The issue of trust and health research is a focus of this episode of Stats and Stories with guest Sandra Alba
+Timestamps
How did trust become such an issue? (1:44)
Scientific vs. public debate (4:57)
Cultural disconnects drives distrust (8:50)
More certainty (11:45)
Engaging nurses and doctors (16:30)
COVID Vaccine (19:16)
Work with TB (21:15)
+Full Transcript
Rosemary Pennington: The work of health researchers is vitally important to the safety and well-being of people around the world, with the COVID-19 crisis making that all too clear. However, health researchers are facing a crisis of their own, a crisis of trust. It’s fueled partly by the proliferation of social media, the politicization of data, and the reluctance of some researchers to discuss their work. The issue of trust and health research is a focus of this episode of Stats and Stories, where we explore the statistics behind the stories and the stories behind the statistics. I’m Rosemary Pennington. Stats and Stories is a production of Miami University’s Department of Statistics and Medial, Journalism and Film, as well as the American Statistical Association. Joining me are regular panelists John Bailer, Chair of Miami’s Statistics Department and Richard Campbell, former Chair of Media, Journalism and Film. Our guest today is Sandra Alba. Alba is an epidemiologist at KIT Royal Tropical Institute in Amsterdam. She was trained as a medical statistician in the UK and soon after moved to Tanzania to complete a Ph.D. on access to Malaria treatment. For the last 15 years, she’s devoted applying statistical and epidemiological methods to programs in low- and middle-income countries. Her research focuses on data quality and good epidemiological- I’m going to start that over again. Her research focuses on data quality and good epidemiologic practice, more specifically the interplay between research integrity and research fairness in multidisciplinary international research. Alba also authored a recent article in Significance Magazine about how epidemiologists might help increase public trust of health research. Sandra, thank you so much for being here today.
Sandra Alba: Thank you for having me.
Pennington: Just so we can get started how did this issue of trust be something that you became concerned with?
Alba: Yeah, I guess many years of working in health research, working in epidemiological research, many years of writing up studies and working on evaluations and then realizing that not so much changes in people’s practice and whether it’s just, you know, people in their everyday lives or even certain policymakers in their professional work, there seems to be a huge gap between how much science is produced and how much science actually impacts people’s lives. And yeah I think it’s, to me, it seemed to go down to something very fundamental sometimes about whether people trust what we produce.
John Bailer: I liked in your article- it really struck me when I was reading this time to talk about trust article that you wrote that trust in science is a global health issue. And so, I- that was really- that really resonated, and I went wow. Now, why do you think about that as a global health issue? Why has distrust in science grown from the ways that you’ve looked at this? And what are the ways that we can start to try to address this?
Alba: Well, global health issues because I started to see it is a problem everywhere. In my work I worked more in Europe and specifically in the UK on childhood diabetes, and indeed as you said earlier Rosemary, I went to Tanzania and I worked down there and it seemed to me that really this was yeah, this problem you kind of see it a bit everywhere in all sorts of fields of research and also in all sorts of countries there seems to be this backlog, so that’s why it seemed to be as much of an issue as the actual health issues are and issue. So that’s a global yeah a global health issue. And when I wrote the article I was focusing especially on the case study of vaccines and the realization that we faced it with vaccines, we face problems in both high-income and low-income countries. In low-income countries, you know, we work so hard on trying to get people to access vaccines in the sense that, you know, the health system is able to provide the vaccines and people are able to get to health facilities and get the vaccines, so that is the work that is being done. And in many high-income countries, this access is there in a certain way, but not being made use of somehow. So yeah, problems of different nature but in the end, both end up similar in the sense that we have many people who are not vaccinated for different reasons. So, in that sense global.
Richard Campbell: Sandra in your one of your Significance pieces you make a distinction between the public debate and the scientific debate. Could you talk a little bit about that?
Alba: Yeah, so this is this is actually- I need to credit one of our collaborators Mariska she was one of the people who came to our event at KIT and brought that dimension of really two parallel debates going on at the moment. There’s one scientific debate that scientists engage with before mass publications and a blur of conferences, and then there’s another more public debate going on, where people discuss many scientific aspects that affect their lives and, at the moment [inaudible] of course, we saw it before, but now it’s being so amplified with COVID. We have many many many people discussing COVID and its many assets, but not within the traditional scientific debate. And what Mariska says, and I think really focused on the problem is that these two debates are going on in parallel. We have scientists discussing scientific issues in the scientific arena and we have other laypeople, who actually represent the majority of the people in this world, and they have another debate. And these two debates are going on in parallel, and that’s really a problem because scientists- say non-scientists believe they’re having a scientific debate, but scientists do not recognize it as such. And as a result, they don’t engage in it; they just miss it. So that’s where we have two parallel debates which actually could benefit a lot- would benefit a lot if there was actually more movement between those scientists injecting within the public debate and the public also providing input in the scientific debate. And if we both listen to each other a little bit more…
Campbell: So how do scientists enter that debate; do a better job of that? There seems to not be enough overlap. So, you think of the way big corporations and businesses work, they have giant P.R. Departments that get the word out. A lot of researchers at universities seem like there’s a P.R. waiting there but they do all kinds of things besides- seems like scientists need their own kind of P.R. wing to get the word out and communicate better. What do you think?
Alba: Yes and no. Because scientists need to just do it themselves and we’re seeing that more and more, but actually for example on Twitter there’s interesting hashtags. There’s an Twitter I just discovered recently and there’s the hashtag stats Twitter I think also, and that’s really interesting and it’s again a way, in theory, this is a way that scientists can also contribute to the public debate, but unfortunately what I’m seeing still is that we’re still again having scientists discussing with scientists on Twitter. So they’re still not- it’s the public platform but it’s still used in a very scientific niche way, and so I guess one good step is to start engaging on Twitter, but then you also need to start discussing in still a less technical jargon-full way to still actually on the platform debate with the rest of the world.
Pennington: This reminds me of some of the debates in the development communication field that I’ve done some work in, where you know, people would go into communities like Afghanistan, for instance, and try to do community projects that might be meant to empower women or to help increase education and they would often fail because there was a lack of understanding of cultural practices in a community, and I’m wondering- I mean it’s a huge issue to tackle but how much is this issue of distrust of scientific information and particularly health research can be boiled down to maybe this issue of a cultural disconnect; maybe researchers not knowing what to use in the culture to help communicate issues about public health.
Alba: Yeah, certainly, but I think there was a very interesting conference last week it was to show info epidemiology conference which I attended, and there was a very inspiring keynote speech by David Navarro, who discussed exactly this topic, and really called for more humility on the side of researchers and engaging more and listening to people’s concerns going and going towards people, rather than trying to get people to come to you, so it’s really a bit shifting the way we work towards a lot more dialog and listening to people’s concerns and really understanding where people are coming from, and understanding people’s concerns and listening to those concerns and reacting to that, rather than just saying that’s not the problem, there’s something else; let’s go where I want you to be. But you know, the idea really resonated to me as a direction towards which we should go, but to answer Richard’s question of how do we do it, yeah I still don’t know how we should really do it. What is the forum? Because one could say it’s time to engage more in social media because that’s where the public debate is going on but still you know, how? I’m still not sure what is the way.
Bailer: I like the idea that you just floated there, of having the stakeholders involved. And I wonder how many scientists think about the public as a stakeholder in the work that they do. I mean that’s something that’s just like wow, I’m sure- I think that a lot of times you think about other people that are in the area that are working on similar problems as ultimately the stakeholders. You know one of the things that I thought of as Richard was asking his question was how some journalists will embargo certain studies and then do the press release to try to push this out and that’s where you get the news, but then you also tend to get this hyper-focus on a single study or a single story, not on this integrated story. And I wanted to follow-up on this idea of the scientific debate versus the public debate. A lot of times within the scientific debate there are aspects of uncertainty or limitations, and you know within the public debate I wonder how often that the uncertainty and the limitations are translated into we know nothing. You know that it’s kind of extrapolated to the extreme. So how do we reflect the fact that science isn’t fully definitive and that there’s still more wiggle room where people are looking for more certainty? That’s a really easy question right, Sandra?
Alba: Yeah, actually I interviewed- I talked to two journalists about this some time ago and I was really trying to get out of them how can we better communicate this uncertainty in science, you know? It’s important that this is reflected, that it becomes clear that what we know today might be slightly different tomorrow, but then he said exactly what you said John it’s like yeah, and then we don’t know anything. Especially now people really want certainties, they want science to give them certainties and if science doesn’t give them certainties that’s when they go somewhere else. So, he said actually in the scientific work he tried – he didn’t want to go too much in that direction. Not in his scientific work, sorry, in his journalistic work. He was saying yeah, sure important, I understand but this is- what you’re mentioning will only resonate in the elite part of our readers who will connect the very subtle message, but the majority of our readers will not connect to that and will not understand and just think yeah whatever. So actually, I maybe should mention who it is it is Lucas [inaudible] a journalist in Italy. But especially with COVID, he thought looking back he thought there maybe had been too much of an emphasis on we don’t know we don’t know we don’t know, and this gets restated and people thinking we can do whatever because you know we don’t know anything. And he thinks maybe some precious time had been wasted that could have been used to act quickly because, still, there was too much of thinking we don’t know we don’t know but by then we kind of knew that we should have acted. So, it’s very difficult to strike the right balance right? Because on one hand, one could say that this explaining that maybe we could engage people more into say more scientifically-endorsed behavior if they really understand the scientific process and the way it works and that it has its uncertainties and that we build a little bit more brick by brick. So, one could say that understanding this process may help or maybe it will completely backlash, and so it’s very difficult to know what we should be doing.
Pennington: You’re listening to Stats and Stories and today we’re talking with Sandra Alba of the KIT Royal Tropical Institute in Amsterdam. So you were talking a bit about the struggles of journalism, but I wonder if there are examples of journalists who you think have done or stories that you think have been reported really well when it comes to public health issues around this issue of uncertainty? Because it does feel like news media have a role to play in this propagation of trust in health information.
Alba: Yeah, I’ve seen plenty of good reporting and I must say really, in general, I’ve been really impressed by what a great job journalist have done. I think they’ve really- many have done a really good job at making messages clear and approachable and I’ve been impressed really by their speed, you know? Compared to scientists they’re able to print out really good articles and good work quickly, and I’ve gotten most of my COVID information actually from journalists. So I can’t necessarily name many, but yeah from all the most reputable outlets that I’ve come across like The Guardian or The New York Times or I don’t know, I’ve in general been quite impressed by the work that they’ve done and they have really written a lot of the caveats, you know? Some of the earlier studies on hydroxychloroquine and I think journalists have done a good job in explaining all the caveats of saying these are small studies, and they haven’t been conducted with the most rigorous methods of random allocation. So, I think all these messages in many of the articles, in general, I think they do a really good job.
Pennington: That’s great.
Campbell: I saw some other connection that you made that reminded me of journalism. You talked about epidemiologists should do a better job of engaging with health providers, with nurses and doctors. And you talk about how people, in general, have great trust in their doctor. It was something like 70%-75%, and it reminded me of journalism. People trust their local journalists 70%. They don’t trust national journalists very much; it’s like 50% in the U.S.. So as an epidemiologist who does a lot of data work, how do you do that? How do you engage general nurses, doctors, people on the ground seeing patients?
Alba: I guess most of our work is done engaging with providers who will be defining the research questions; so more at the earlier stage of research to ensure that we have relevant research questions that really address their concerns, rather than concerns we have from a merely scientific point of view, so that’s our way. Also, to a certain extent with dissemination in the findings or let’s say more in the communication of findings. So, in what way would this message be best communicated to your peers or also to your patients? So, I think that’s one way to engage with them. And I guess you can also go one step further which is to also engage them in practice also. To in the way that they interact with their patients, but I will say with that I don’t have a lot of experience.
Bailer: So, I’d like to give you a chance to speculate on the future. So, one of the things that you started your time to talk about trust with was about to do vaccines do more harm than good? And one part of the COVID story that’s being told with kind of strong sentiment and emotion is once we have a vaccine then everything will be as before; that’s often the message that seems to be conveyed. So, will people even use the COVID vaccine if its available? I mean, will they come and take it? There’s a lot of evidence, as you know, about the effectiveness of vaccines and yet there’s reluctance across the spectrum of the world, you know across countries across conditions within countries, of people that are reluctant to engage- and these are cases with proven effective vaccines, as opposed to now, where we’re looking at potential effective vaccines. So now, we’ve got a little bit of time, maybe another four or five months but- at the best case of having this. So what kind of things do you think about in terms of when a vaccine starts to roll out, what are some of the ways as you think about trust and as you think about this connection with local care providers and the importance of education about trying to get people to engage and use these opportunities, these vaccines?
Alba: Yeah, I must say when it comes to vaccine my major concern at the moment is not even so much how do we get people to take the vaccine, but it’s more how do we ensure that we provide access to the vaccine? Because not only do we have to find a candidate, but then we’ll have to mass-distribute it, mass-produce it first, then mass-distribute it, and how do we ensure that this is done in a fair way? That is more my concern. If we think the amount- this is a global pandemic; it is everywhere, it affects every single one of us, and this I find really very daunting as a first step. So, to be honest, that occupies most of my thoughts. But indeed it’s also very important to think how yeah, and I guess a lot of it also has to do with the technicalities of the vaccine and whether it will be one-shot or whether it be something you have to take every month, every year; that will have huge implications. I mean we see the flu vaccine and there isn’t very high uptake, and I think it will be a bit similar to that one. And I don’t know- it can go both ways, right? Because if really it’s being seen as a panacea, which clearly it isn’t but maybe the fact that it’s being seen as a panacea may help with its uptake, I don’t know. It will be interesting to see.
Bailer: So, can I just change gears a little bit? When you and I talked previously, you talked about some of the work that you were doing, and you talked about how you were working with entertainers in trying to get this message out, can you just talk a little bit about that? I found that to be a fascinating story about how you were enlisting very visible figures to try to get the work done.
Alba: Yeah, so that’s- the work we originally want on TV on tuberculosis in Uganda. And there we are- so we- as an epidemiologist at KIT, where I work, we also do a lot of monitoring and evaluation of health interventions, so that collecting and analyzing data relating to public health intervention throughout the rollout of this intervention, through to understand whether the intervention is going as planned and to suggest certain changes in the design of the intervention. So as part of our monitoring evaluation work for KIT we’re also monitoring and evaluating an intervention in Uganda, where one of the biggest music stars of the country who is called Bebe Cool, is working together with the [inaudible] partnership to increase awareness about TB. And this is really fascinating and also really interesting to the concept of trust, because he really he has a huge fan base, people who really, you know, listen to him listen to his songs and so it’s really awesome to see how he’s using this platform to really centralize people to the importance of being tested for TB if you have symptoms and doing a lot of work to destigmatize TB. It’s still a very stigmatized disease in Uganda so he works a lot to destigmatize it and so he’s in his concerts and he goes hey are you guys all feeling good? Yay. You know, ready to sing a song? Oh yeah! Are you coughing? [laughter] and yeah he says well if every you’re experiencing any of these symptoms and you know he lists them and you know outside the concert hall, there’s the fan from the national TB program to go over there get tested and, you know, let me know how it goes and people really engage with him like that and he uses that to encourage testing for TB and I am very curious and eager to analyze and see how that goes. Unfortunately, the timing has been terrible because of the COVID strain. So many of his concerts have been canceled, of course, because Uganda had a very strict lockdown. But he had a nice song- so he’s also now thinking how he can combine TB and COVID in messages because in many ways they are similar, and the effort of the health system in Uganda has tried to respond as much as possible in a coordinated fashion for TB and COVID so he’s trying to work on that now.
Pennington: Well, that’s all the time we have for this episode of Stats and Stories. Sandra, thank you so much for being here.
Alba: Thank you for having me.
Pennington: Stats and Stories is a partnership between Miami University’s Departments of Statistics and Media, Journalism and Film, and the American Statistical Association. You can follow us on Twitter, Apple Podcasts, or other places where you can find podcasts. If you’d like to share your thoughts on the program send your emails to statsandstories@miamioh.edu or check us out at statsandstories.net and be sure to listen for future editions of Stats and Stories, where we explore the statistics behind the stories and the stories behind the statistics.