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When HIV Research and Data Collection Is at Odds with “Do No Harm”

Posted 21 July 2014, 04:05 A, by Guest

By Anita Datar, Senior Policy Advisor, and Ron MacInnis, Deputy Director for HIV, Health Policy Project, Futures Group

MELBOURNE, Australia—Using maps to understand spatial patterns in disease epidemics is nothing new. Nineteenth century epidemiologist John Snow’s cholera map was a game-changer, allowing him to trace cholera’s devastating path at the most granular, household level. Within the HIV field, multi-colored push pins and paper maps were being used just a few years ago to identify the location of existing health facilities in order to inform where facilities were still needed in order to increase coverage and inform strategic planning.

But gone are the days when maps existed in folded accordion rectangles, purchased from a book store or buried within the pages of an atlas. Today, anyone with a smart device—a phone, a tablet, a computer—can view a street-level map of virtually any location on earth. 

To support countries to use a geographic approach in their HIV response, the public health community now uses data from geographic information systems (GIS), translated through advanced technology, to link multiple, disparate, data sources. Advanced software and mapping techniques layer data in a way that illuminates the multiple dimensions and factors that contribute to increases in HIV incidence and limit access to critical services at very local levels.

In advancing this basic approach to public health—the need to tackle the HIV epidemic by identifying and reaching people who are most at risk for HIV—international public health professionals find themselves facing a double-edged sword. On the one hand, matching the geography of key populations to programs and life-saving services is a powerful weapon in the fight against HIV. On the other, this very data risks putting sensitive data about individuals and services in the hands of those who might inflict harm. This risk is especially pronounced in countries with legal and rights-constrained environments— where engaging in same-sex relationships, sex work, or injecting drug use is criminalized, and where identifying as transgender is often criminalized and simply unacceptable.

So how do we harness the potential of spatial analysis and its ability to shine a light where health and social interventions are needed, while upholding public health’s first principle, to first “do no harm?”

These are the issues that the USAID- and PEPFAR-funded Health Policy Project (HPP) explored July 19 with colleagues from multiple countries at the Men Who Have Sex with Men Global Forum (MSMGF) pre-conference for the 20th International AIDS Society Conference in Melbourne, Australia.

In discussions at the consultation, participants agreed comprehensive guidance is needed to ensure that sensitive, geo-located data focused on men who have sex with men are collected and used in a thoughtful and transparent way to help answer questions that will actually make a difference in the lives of those most at risk for HIV.

Another basic approach to public health planning, they suggested, is partnering with communities affected by an epidemic to best determine and implement solutions. And the questions that came up were good ones: Who needs to have access to detailed street-level maps? In what ways will these maps help the communities they target? To what extent are communities engaged in the design and implementation of epidemiological and programmatic mapping? Is community engagement an afterthought or do researchers design their studies in partnership with community leaders? Do the study designers engage with community institutions with the power and potential to both hinder and inflict harm—such as law enforcement, political and religious institutions, news media, and other groups? Who owns the data, and how is it shared beyond the targeted community? How can governments—local and national authorities at all levels—assure the safety, confidentiality, and privacy of the individuals its public health experts need to work with?

UNAIDS recently published Location, Location: Connecting People Faster to HIV Services to emphasize the need to geographically target HIV programming data. Likewise, the Global Fund has urged its grant recipients to programmatically map and estimate the size of communities most at risk for HIV and most in need of HIV services. Both of these institutions call on all countries to specifically map the epidemic by locating men who have sex with men, sex workers, and people who inject drugs—those populations most affected by HIV infection and morbidity in nearly every country across the globe.

If we expect to maximize the potential that programmatic mapping and spatial analysis offer to those working on HIV, the questions raised by participants at the day-long consultation today are the questions that need answering. Many of the participants work directly with communities that are legally, politically, and socially shunned by their country legal and political systems—individuals working against great odds to identify solutions to the epidemic. That they are required to exercise such caution, concern, and courage to implement basic public health approaches and survival strategies should give us all pause.

For more information

With support from PEPFAR and in collaboration with the Global Fund, the Health Policy Project is providing technical assistance to 10 high-impact countries in Africa and Asia to strengthen their use of geospatial analysis in HIV policymaking and strategic, financial, and program planning. To read about the Health Policy Project’s GeoHealth Mapping program, see: Know Your Epidemic, Know Your Response. 

 


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