An inspiring endeavor that will undoubtedly change the face of epidemiological research is being completed by a student. Jonathan Smith is an epidemiology student at Yale University who recently completed his thesis research on the HIV/TB epidemic in South Africa. He not only collected quantitative research, but also took the time to learn and understand the community. He is putting his work into a documentary film, but needs more support in order to make it a reality. The stories that he has to share are deeply moving and have the potential to make a big impact beyond the communities where he completed his research.
Support the film’s production here on KickStarter >> http://kck.st/ocZ5rn
I interviewed Jonathan this past week over email:
1. As a student from a Western country, why do you feel it is your place to tell the stories
of South Africans?
I really like this question – I don’t feel like it is my place at all. I am showing these stories, not necessarily telling them. My role in this project is to be a vector for their stories to unravel by themselves – then to stay out of the way! I think often times people do not appreciate the contextual differences in disease – any disease – and think what solutions work for ‘us’ will work for ‘them.’
This became real to me when I was living with Mr. Mkoko. I struggled to make headway in HIV education, prevention, and testing, at first, but eventually broke through with some success. Not by imposing what I was learning from school on them, but by working together, understanding the cultural beliefs of the community, and taking those beliefs seriously (not casting them aside as ‘stupid’ or ‘wrong,’ although they were indeed dangerously misleading). Because of this, I was formally accepted as a ‘brother’ into their community – even given the tribal name Masheshay’nike. This meant I was no longer an ‘umlungu’ (‘white person/outsider’) and that they now would respect my views and thoughts as one of their own – I worked with their traditional healer in a pseudo-scientific, quazi-clinic capacity that promoted proper prevention strategies and testing without undermining their traditional practices. This was an intense amount of work,
but if I were to just go in there and say “this is right, you are wrong,” I would have been shut out immediately.
2. Since there have been many fully funded large scale studies completed by international organizations, how has your work been received coming from a student?
For the film, I think being a student really helped me. People were really willing to help since I was just a student. I think it made the industry executives and government officials a little bit more relaxed – i.e. this was ‘just a student project,’ as opposed to a mainstream film, if that makes sense. Several production companies let me use their studios for interviews for free, international universities accommodated me, and people favorably responded to interview requests all because, honestly, I think they remembered what it was like being a struggling student.
3. How has your work been received in the epidemiological community since you
are using a mixed methods approach as opposed to sticking with traditional
So it’s a little tricky – there are two things occurring simultaneously, but independently: a research project and a film. I am simultaneously working on a mixed-method research study at Yale that incorporates both qualitative and quantitative measures to indicate contextual factors that lead to increased TB and HIV vulnerability among this population. In other words, what other forces are at work that increase disease vulnerability and allow this cycle of disease to perpetuate. The film itself, while technically independent from the research, further investigates the lives of people caught up in the very cycle that I am researching. So puts a face to this and hopes to shift the conversation away from the data and more towards the person. Hopefully combined, they will really demonstrate a need for change – the data will explain that this is a widespread and serious problem (i.e. not some crazy activist film), and the film will demonstrate that for each ‘number’ that we quantify in the research, the impact goes well beyond just the statistics. So one does not negate or undermine the other, they actually go hand in hand to augment each other.
As far as reception from the academic community, people have been very receptive to the idea. I work with a number of professors at the University, and we are currently trying to figure out how we can expand on this idea, how to replicate it in other issues, as well as metrics to gauge its effectiveness.
4. What impact do you hope to achieve with the completion of the documentary?
What will your research and documentary be able to do that “million dollar” studies have failed to do?
What I think any research project on this issue has yet to do is place accountability. I’m in no way against the million dollar studies – we need them to highlight the problem. But over the past few decades, we have used this research to define the problem now with surgical precision – we know what it is. We know why. We know what needs to be done. We know how to do it. We know certain methods will work. But nothing is being done. Why? Because there is no accountability. Its not just ‘big mining’ dropping the ball – its everyone. Governments, the industry, and the unions could do more.
Even researchers. Because rates of TB and HIV are so high, researchers now use the mining
population for cohort studies that have nothing to do with the population itself, they just know they will get the disease so it would be an easy cohort study. They are literally human guinea pigs for epidemiological research. We are dancing a fine line of ethics when we treat a population int his manner.
I hope the film will educate and empower civil society to place accountability on the decision makers to actually get things done – to make the appropriate policy changes or actually enforce existing ones. I hope to string together motivated individuals and organizations to say, “Now we are watching.”