Investing social capital
Keys to conducting research abroad … and at home
Haitian AIDS researcher Jean William Pape, M.D., and David Holtgrave, Ph.D., an expert on HIV prevention programs in the United States, share their views about what it takes to conduct AIDS research in resource-poor countries, and what we can learn from these experiences.
Holtgrave chairs the Department of Health, Behavior and Society, in the Johns Hopkins Bloomberg School of Public Health. He formerly directed the Division of HIV/AIDS Prevention, Intervention Research and Support at the U.S. Centers for Disease Control and Prevention (CDC), and was vice-chair of Behavioral Sciences and Health Education at Emory University’s Rollins School of Public Health.
They spoke with Lens editor Bill Snyder in 2006.
Dr. Pape, I’d first like to discuss the paper, “Anti-retroviral therapy in 1,000 patients with AIDS in Haiti,” published in 2005 in the New England Journal of Medicine. What were some of the logistical, economic and social barriers to conducting this research?
The major difficulties that we encountered were mostly related to adherence. It is very difficult to have anybody stay on medication for a long time; it’s even more difficult for people who are very poor or cannot afford the costs of transportation and could not afford to eat on a daily basis.
This is why we developed a team approach involving the psychologist or social worker, the nurse, the pharmacist, the physician—actually the physician was the least important—as well as people living with AIDS on HAART (highly active anti-retroviral therapy) who also worked with us.
We also had a very sophisticated data management system to keep track of patients’ visits. This system informs immediately the staff about those who missed an appointment. Since patients do not have telephone at home we had to train field workers to visit them at their home, report on their status and give them another appointment. We also had to provide nutritional support and provide as well free transportation to and from the clinic… With this package the adherence issues were mostly resolved.
In addition, this study was conducted at a very difficult time. President Aristide was sent into exile and there was a lot of disruption of the social matrix of this country. There was a lot social unrest. There was a lot of political violence. And we had to develop contingency plans.
Fortunately, we live in Haiti. We know that this is something that can occur, and we have developed contingency plans and were able to place medications at various sites in the city, and give phone cards to our patients so that they could call us and know where to go and get their drugs… And this way all of our patients stayed on their medication even during this chaotic period.
What is important for researchers from the United States to consider when conducting studies in resource-poor countries?
I can list 10 very important points. The first one is that the research has to be focused.
It needs to be cooperative with clear advantages for both parties; you cannot just conduct research in a country and not involve a local entity.
The parties involved must be credible. In some cases it could be the reputation of one person that will decide on the fate of the research.
You have to plan long term. It may take 15 to 20 years. This is what it takes for capacity building in human resources, equipment and infrastructure so that when the research is done, there is something left in the country.
It is necessary to share and use the results of the research in the country where it is conducted.
It has to be comprehensive. You should have a holistic approach involving patient care and training whenever possible. We have been focused on the family unit. This has been our strength here at GHESKIO.
The research should be relevant. It should address important public health issues faced by the country where the work is planned.
It must rest on strong ethical standards.
In addition to that you need to have a research where you have collaboration with the government whenever possible but in a manner that is apolitical.
And finally, you need community support.
Dr. Holtgrave, you have spoken recently about why the CDC was unable to achieve its goal last year of halving the annual number of new HIV infections. Can you elaborate?
We think that over the course of the epidemic several hundred thousand infections have been prevented in the U.S.; perhaps as much as a little over a million.
I think the question that you’re raising is a very important one for the U.S. at the moment. CDC set a goal of reducing new infections by half by 2005, from 40,000 a year down to 20,000 a year. Clearly 2005 is over, and CDC’s continued best estimate of the number of new infections a year is (still) 40,000.
One important reason is resources. There have been at least two published estimates of how much additional resource would have to be made available for a person at risk of infection or transmission in the U.S. to receive good quality prevention services.
The best estimate is about $300 million a year. That would mean that CDC’s budget would have to go from about $700 million to about $1 billion per year.
However, over the last few years, if you adjust for inflation, the investment in prevention in the U.S. is either staying the same or actually going down a little bit. And so unless we expand our efforts to try and address these unmet needs, we’re going to fall short. I am hoping that the $93 million increase for domestic HIV prevention in the president’s fiscal year 2007 budget proposal is one step in a better direction.
Another very important issue is having science-based prevention tools that we know make a difference, yet seeing those interventions sit on the shelf—not be able to be used.
Take needle and syringe exchange programs. A lot of scientific studies show that they do seem to make a difference in terms of reducing needle sharing and reducing HIV infections. They have even been found to be cost-effective. But there continues to be the ban on use of federal money for needle and syringe exchange programs.
Some states, cities and private funders have started to make up some of that difference, but still the federal ban is an important barrier.
The third major area, discrimination and stigma, is also very important to address in this society. If populations who are disproportionately impacted with HIV are discriminated against or stigmatized, it’s very hard to put in place effective prevention services.
Dr. Pape, are you seeing these kinds of barriers also in Haiti?
We have the same (problems) but with much greater magnitude. Haiti has a lot the problems that facilitate HIV transmission.
We started with a very high HIV seroprevalence; we have the highest HIV seroprevalence outside of Africa. We are the poorest country in the Caribbean, (and have) high rates of sexually transmitted diseases, which are known to be cofactors for HIV transmission.
We have what I would call sexual promiscuity, because men have contact with many women and have contact with commercial sex workers. At one point in 1982, 62 percent of sex workers were HIV infected.
We have a high illiteracy rate—about 40 percent. But still at the time when we had very little resources, with prevention in particular, we’ve been able to reduce the seroprevalence rates in documented national surveys from 6.2 percent in 1993 to 3.1 percent in 2003.
They’re going to have another (survey) this year, and I expect that (the rate) will be lower than 3 percent.
What can the United States learn from research conducted in resource-poor countries in the developing world?
Number one, it is possible to conduct high-standard research with high ethical values in developing countries.
With limited resources you can obtain excellent results—if you have a well-conceived plan.
And the third thing which we have done is that if you can rapidly implement the results of the research, (it) will have national impact.
The 100-percent condom use program that was put in place in Thailand I think suggested a very interesting and effective kind of policy. Programs for injection drug users early in the epidemic seemed to make a major difference in Australia.
The idea of couples counseling (for HIV prevention) has been an important one now throughout the epidemic. That work was really pioneered in Africa.
And so I believe there are many lessons to be learned from around the world about what kinds of policies are most effective.
Dr. Holtgrave, I understand that your department at Johns Hopkins is exploring how multi-level interventions work together to improve health. Why is this approach important?
The new Department of Health, Behavior and Society will look at a number of different disease areas, from HIV to cancer to cardiovascular disease to diabetes.
When we consider any one of those specific disease areas, we don’t think about what’s the one magic bullet to change health behavior in that particular area… but rather, we try to understand how to intervene at all or at least a multiple of those levels.
What are those levels? Well, you might intervene with one individual at a time, with a couple, a family, with the community, with the whole society or a whole nation, and you might even go beyond that and say you want to change policies, laws or even the environment in that nation.
In HIV prevention, our department is interested in individual counseling, group and community-level interventions, services that address entire social networks, and structural interventions such as using housing for homeless persons as a kind of HIV prevention intervention. Further, we are interested in addressing multiple levels at once.
Dr. Pape, how important to the research has been the contributions of your colleagues at Cornell and Vanderbilt?
They’ve been invaluable. There is no way that we could have done what has been done, and there is no way the epidemic could be somewhat controlled in Haiti without that kind of support.
With Vanderbilt, what has been very important is the contribution of Peter Wright, M.D., who heads pediatric infectious diseases at Vanderbilt, in getting (GHESKIO) into (testing) HIV vaccines.
Vanderbilt and Cornell have been instrumental to initiate ACTG (AIDS Clinical Trial Group) studies. Those were very, very important studies for us to initiate and scale-up HAART in Haiti, as our staff learned from the vigorous research training and applied the experience acquired to patient care. We could not have enrolled 100 new patients per month, and that’s the rate we’ve been scaling up HAART. We have now over 3,000 patients on HAART.
We also had equipment that was necessary to do the tests and the reagents, as well as specific clinical research projects, where you could train a young faculty staff member in the conduct of research. They are the ones who said, ‘Why can’t we apply these same research tools for patient care?’
I think that separating completely research from patient care doesn’t make a lot of sense because research has been instrumental in both training the personnel, because we train them with the results of the research that we conduct on site, and also it has been instrumental to provide the proper care.
What is the most important kind of international support that should continue for your program?
At present because we have very well trained staff, I think the provision of the drugs is essential, as well as the reagents, because the one-year cost for placing a patient on HAART in Haiti is still expensive—around $2,000 a year per patient.
Dr. Pape, are we training enough of the right kinds of researchers to do the studies that need to be done on a global scale?
Clearly, in Haiti, we are not training enough people.
We’ve trained since 1992 over 10,000 health personnel including 2,000 physicians. Unfortunately many of those physicians tend to leave Haiti. We’ve lost over half of them, but we’ve also trained psychologists and trained social workers.
Now what I think is important in a place like Haiti is providing on-the-job training. Training them behind a blackboard is not going to make a difference. We give them very little theoretical training. The majority of the training is done on the job.
What AIDS has done also is created teamwork. It’s not a team composed only of physicians. We also have people living with AIDS who are part of that team, field workers.
Field workers are our extension because people here don’t have phone numbers, so even the best address would not get you close to their home. You need field workers who are able to visit patients at their homes and verify that their address is correct.
Previously I think there was a sense in public health that we needed to bring people together from a lot of different disciplines. But now increasingly there’s recognition that as we train people in graduate programs and even now in undergraduate programs in public health, it’s important to give people a broad array of skill sets.
A special skill in and of itself is how to work together on an interdisciplinary team and how to be appreciative of other disciplines, how to phrase questions in a way to draws out the views of people from other disciplines. More and more we’re seeing people trained to be multidisciplinary themselves as opposed to simply bringing one disciplinary viewpoint to a multidisciplinary team.
That doesn’t mean that you wouldn’t still have teams that included people from a variety of different fields, but it’s important to have people who’ve been trained in how to work in an interdisciplinary way and who themselves have experienced some training in all of the different areas of public health.
One of the things we’ve been interested in studying is the importance of not only poverty and income inequality as predictors of infectious diseases, but also social capital as well, and looking at how strongly people are tied together in a community.
Do people say that they have friends in the community? Do they share meals together? Do people belong to social organizations together? Are these social factors promoters of—or protective against—infectious disease?
With regard to predictors of STDs and HIV/AIDS and even teen pregnancy, we’re finding that although poverty, income inequality and social capital are all important, actually it is social capital that seems to be the strongest predictor.
We have found that in states where there is higher social capital (higher interconnectedness), there are actually substantially lower STD and AIDS case rates. Teen pregnancy is also much lower when social capital is high. Social capital is protective.
That suggests that maybe if we were able to build stronger neighborhoods, stronger communities, that we might be able to intervene in multiple diseases at one time.
Dr. Pape, have you looked at the element of social capital in Port-au-Prince?
Yes we have. We work with a very poor community, and most of them live in the slums. And what we have seen is that very often a very small amount of (social) capital makes a huge difference in both education and health behavior and diseases.
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