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
quantitative research?

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.”

(photo credit: WHO)

From the UN Declaration to Amnesty International, between Paul Farmer and William Easterly it seems that everyone has a different understanding of what constitutes a basic human right and the cause of its absence. Michael Keizner has been building the discussion on health and human rights on Change.org’s Global Health blog while NYU Professor, William Easterly has recently entered the debate as a response to Amnesty International’s position on poverty related to human rights. This fueled a response from Amnesty International, which stated that Easterly was “pretty off base.” Easterly followed his Amnesty International response with an end to his “human rights trilogy” by asking Paul Farmer who should be held responsible for satisfying the right to health care?

The World Health Organization (WHO) states health as a human right as:

“the enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being…”

It seems that Easterly’s human rights criteria is trapped in an old international law paradigm where there must be someone at fault or someone to blame. He also forgets that health is directly linked to food. You cannot have good health and not have food. Effective aid, not seen in today’s aid schemes, based in sustainable practices (not just buzzword reporting) that supports an individual’s right to develop themselves should look comprehensively towards the needs of a community of individuals. The ideas of human rights, foreign aid, and development should be less focused on international systems and more focused on building strong communities that meet their own human needs: health care, food, water, etc.

Within this debate of health and human rights, where does SCOUT BANANA fit. As an organization that makes and stands behind the statement that:

“global health is everyone’s responsibility and every individual’s human right”

Paul Farmer has the right idea, as Easterly quotes from his Tanner Lecture in 2005:

“only a social movement involving millions, most of us living far from these difficult settings, could allow us to change the course of history….troves of attention are required to reconfigure existing arrangements if we are to slow the steady movement of resources from poor to rich—transfers that have always been associated… with violence and epidemic disease… whether or not we can say “never again” with any conviction—will depend on our collective courage to examine and understand the roots of modern violence and the violation of a broad array of rights, including social and economic rights”

This is exactly similar to SCOUT BANANA’s understanding of health as a human right and a responsibility. It is a right where we do not attempt to place blame or hold the past accountable because those become frivolous exercises that produce no results. When we delve deeper into the root causes of issues, for example the driving forces of slavery, we must focus on a responsibility to not repeat the past and make ourselves accountable in the future.

There is no way that the entire European population and its descendants can be held accountable for the evils of the slave trade. While the same ideas of human rights did not exist in the time period of slavery, it is similarly difficult to place blame on systems (and populations) that drive the causes of poverty and lack of access to health care. Many people that I work with on development projects feel guilty that they are so privileged and wealthy compared to the communities that they work with that are so poor. SCOUT BANANA teaches its members to not feel guilty, but instead to feel responsible. Understanding personal privilege related to the oppression of certain populations within societal structures can assist in creating positive impacts. Human rights don’t necessarily have to be about placing blame, but rather developing an understanding of responsibility.

So Professor Easterly when you ask who is responsible for satisfying human rights: it is you, it is me, it is all those who dream of making a difference, and it is also those who lack the very human rights that we hold dear. Placing blame is not a concrete step forward, learning from history and recognizing where our privilege fits can be a first step towards effective actions. I too see Paul Farmer’s vision of a movement of millions, near and far, taking actions to shape a better future where human rights are everyone’s responsibility and every individual’s human right.

From the Article 25 of the Universal Declaration on Human Rights:

“Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.”