Over the next week, I have the pleasure of welcoming Jonathan Smith, a recent graduate of the Yale School of Public Health, and a current lecturer in Global Health, to the Blog. Jonathan has been working on a documentary about his research entitled “They Go To Die“, and over the next week, I’ll have the opportunity to talk to Jonathan about his experiences making this movie.

The interview is split into three parts: Part 1 will be a broad background to the area, Part 2 covers the filming experience, and finally Part 3 will talk about the role of storytelling in research. If you have any questions for Jonathan, please do not hesitate to let me know. I’m really excited to be doing this – I believe that academia needs to branch out into other avenues to help convey our message, and this is just one route we can take.

Jonathan has mounted a campaign on Kickstarter to help fund the editing and final steps in making this movie a reality, and if you would like to support him, please click here to donate.

Hi Jonathan! Thanks for joining us (well, me) at Mr Epidemiology. Why don’t we start by introducing you to the audience …

My name is Jonathan Smith and I research TB and HIV in the context of migrant populations, specifically goldmine workers in South Africa, at Yale University’s School of Public Health (YSPH). I am currently a lecturer in the departments of Epidemiology of Microbial Diseases and Global Health at Yale, and an affiliate of Yale’s Global Health Leadership Institute.

As a graduate student at YSPH, the more I researched mining and TB, the more I realized that another traditional research project would do little to actually solve anything. We can get to the specifics as to why in a moment, but in short I posed the question, “What is the point of public health research if there is no public health benefit?” That’s when I decided to take on the role as filmmaker and create the documentary, They Go to Die. And that’s also when my whole perception of global health changed…

Smith (left) with Mr Mahaba in his home in South Africa (2011)

What made you interested in directing and film making? This isn’t a usual avenue that researchers pursue to discuss their work …

So this is a much more complex question than you might imagine. It wasn’t as simple as ‘oh let me make a documentary.’ It took some thought. And I am conducting a concurrent mixed-method research study on the issue – the film runs parallel to that research and seeks to add a human element to the conversation. Combined, I hope to show that the academic research that we do must be augmented with some other ‘force’ in order to create change – research alone only highlights an issue which is often not enough.

The ‘force’ I decided to use was storytelling, and I did this for a discreet reason. For this specific issue, I analyzed the historical narrative of it through multiple prisms: social, legal, political, health, etc. The common link between all of these was not that we didn’t know about the issue – TB in the mines has been illuminated for decades – but it was because there was a terrible lack of accountability among all sectors involved. In the governments, unions, and industry itself, policies had been put in place, promises have been made, changes would be made, etc, but no one ever followed up to see if these would indeed take place. With no accountability, these policies and promises were just empty rhetoric – and not just from ‘big mining’ but from governments, unions… everyone.

So my first realization was, “how can I place accountability on these sectors?“ There are many ways to place accountability; one of which is indeed through research. For instance, you would think if I could do research that would directly tie mining to ‘X’ amount of TB cases in southern Africa, that will prove they must change something, right? That if the sector had to fess up that it was responsible, something would have to change. The problem is that this research already exists, and nothing has changed.

I came to the conclusion that if we place this discussion into the minds and tongues of civil society, we can mobilize the public to enforce this accountability.

I get super nerd-excited about groundbreaking research that comes out in journals across the world… But for most people its not as simple as distributing an academic journal to them – you have to engage and create a cathartic experience that drives people to want to change, and gives them a reason why there should be change.

(Unless I’m totally wrong and people DO get excited about evaluating the population-level relationship between mining and TB using the basic regression model of log TB incidence rates estimated using pooled ordinary least squares. Always a possibility…)

You also have to concentrate that energy so it doesn’t diffuse – I hope the film (once completed) and website will serve as a center point in which to focus this energy and offer an easy outlet to mobilize on the issue.

Mr Mkoko is one of the miners featured in the film

Can you summarize the movie for those who haven’t watched the trailer at the top of this post?

The film portrays the life of four mineworkers that were coinfected with HIV and TB and sent home from the mine due to their illnesses.  However, the film seeks to cut past the politics and statistics by portraying their life- i.e. their relationships with their wives, their sons and daughters, etc.

Patients are defined by more than just their disease, so the film takes a different approach and explores the epidemics in the broader context of their life, instead of through only a narrow context of their disease. It hopes to portray the life of the individual as a whole, not solely the disease by which they are affected.

In the end, it hopes to take a unique approach to epidemics by surface issues of health, human rights, and legal issues in the form of human relationships, love, ad laughter.

What made you want to document this issue in particular?

As a student in global health, it’s easy to notice that this situation has serious global health implications: men come from remote areas ofAfrica, get sick in the mines, then are sent back home with no medication. This means the disease doesn’t stay in the mines, but comes back to rural areas of southernAfricawhere there is no access to medication.

I actually started this as a class project in Global Health at Yale, where I did a powerpoint presentation on it (a terrible powerpoint presentation). Gregg Gonsalves, a well-known AIDS activist, was teaching the course. He was one of the few people who knew the seriousness of this cycle of disease.

Some basic stats that compelled me to investigate further, namely because I didn’t believe them at first:

1. Mineworkers face rates of TB 28x a declared emergency by the WHO and 1,400 times that of western countries

2. 1 in 3 mineworkers will get HIV within 18 months of working on the mine

3. Only 400 out of 28,000 (1.4%) mineworkers got compensation for their occupational TB

4. Aside from HIV, mining is the largest driver of the TB epidemic in southern Africa, responsible for 33% increase in general TB incidence and 760,000 cases each year

You’ve started a campaign on Kickstarter (http://kck.st/ocZ5rn) to help fund the movie. First off, what is Kickstarter, and how effective have you found that so far?

This project is the epitome of a grassroots effort: individuals and organizations snowballing to mobilize on an issue. Kickstarter is a website that helps out independent, grassroots projects through crowd-funding. It’s a direct way for people to get involved and take part in the creation of the film and the project as a whole.

The thing about kickstarter is it is “all-or-nothing,” meaning, if we don’t make the funding goal then we get absolutely no money. Can you imagine how stressful that is? I’ve lost quite a lot of hair.

 

We’ve covered Jonathan’s background, and why this is a public health problem. Come back on Monday to find out how filming went – including stories about Jonathan being chased out of a town by machete-wielding villagers, and the realities of trying to get this film off the ground.

References


ResearchBlogging.org

Stuckler, D., Basu, S., McKee, M., & Lurie, M. (2010). Mining and Risk of Tuberculosis in Sub-Saharan Africa American Journal of Public Health, 101 (3), 524-530 DOI: 10.2105/AJPH.2009.175646

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