Is it time to decolonize global health data?

In the digital age, we’re well acquainted with “data,” a crouton-esque word thrown into conversations, rooted in the morning rush like half-coffee cappuccinos and spreadsheets. Conceptually, data seems benign, necessary, and totally absorbed in the zeitgeist of the 21st century (alongside Survivor, smartphone and bitcoin). The data is reminiscent of the census; scientists in white coats and their clinical trials; suits and ties; NGO board meetings; beaded strings of binary code; bar charts, pie charts, scatter charts, pictograms, Excel endless rows and columns, and more rows and more columns.

However, as part of the global health conversation, researchers and laypersons alike would most often describe the collection, use, and sharing of data as critical to resource mobilization, disease tracking, surveillance, prevention, treatment, etc. (Look at measles eradication! Polio! Malaria! Line graphs A, B and C!)

Thanks to the internet, health data mining is also faster, easier and more widespread than ever. We are increasingly concerned, and rightly so, about data ownership and data sovereignty.

Who has access to the data? Who can own it? Can you own it? As you can see, the conversation quickly becomes convoluted, philosophical even.

Dr. Wendy Prudhomme O’Meara is Associate Professor at Duke University Medical School in the Division of Infectious Diseases, Visiting Professor at Moi University, and Co-Field Research Director for AMPATH. His research focuses on malaria.

Dr. Wendy Prudhomme O’Meara, moderator of the Data as Commodity September 29 seminar and associate professor at Duke University Medical School in the Division of Infectious Diseases, discussed the bioethical complexities of data creation and ownership within global health partnerships.

“We can see that activities – where data is collected in one place, taken out of context, and value is extracted from it for personal or financial benefit – has very strong parallels with the type of extraction and exploitation resources that characterized colonization,” she said in her opening remarks.

Data, like other raw materials (i.e. coffee, sugar, tobacco, etc.), can be extracted, often disproportionately, from lower-middle-income countries (LMICs ) at the expense of local populations. This reinforces unequal power dynamics and recalls the principles of colonialism and imperialism.

This observation is illustrated by the research of panelist Thiago Hernandes Rocha which focuses on the evaluation of public policies and data mining. He recognizes that global health research, in general, should prioritize improvements in the health of the community under study rather than publications or grants. This may seem somewhat obvious to you; however, while academic competition often promotes nuance in the field, it also contributes to the commercialization of global health. Don’t be shy, everyone is pointing Large Pharmacy!

Although Dr. Rocha’s data mining technique refers to “looking for patterns” and analyzing dense data sets, I find “mining” to be an apt analogy for the potential of leveraging data mining and research partnerships between high-income countries and LMICs.

Dr Thiago Hernandes Rocha joins the discussion via Zoom. He is an advisor in health data analysis for the Pan American Health Organization.

Consider the British diamond industry in Cape Colony, South Africa, and the parallels between past colonial mining and current global health data mining. Imagine that you are throwing a pickaxe at the ground.

Now consider the environmental ramifications of mining and the people they disproportionately affect. Consider the persistent social and economic inequalities. Of course, data is not a diamond mine (like your hay day might suggest) neither ivory, nor rubber, nor wood. It’s less tangible (you can’t necessarily physically hold or possess it) and therefore its extraction also feels less tangible, even though this process can have very real-world consequences.

Data as power dynamics is a fairly recent characterization in academic discourse. Researchers and companies have pushed the “open data” movement to increase the availability of data for everyone and for all uses. You can see how, in a utopian society, that would be fantastic. Think transparency! I’m sure you can also see how in our non-utopian society this can be exploited.

Dr. Bethany Hedt-Gauthier, a Harvard University biostatistician and lecturer, described herself as “pro ‘open data’…in a world without power dynamics” – an essential amendment to understanding research as a commodity itself. same.

She justified her position by referring to the Systematic review of authorship in the collaborative health research in Africa that she has conducted in collaboration with others in the field. They found that even when sub-Saharan African populations were the primary sites of study, when associated with elite, high-income institutions (like Duke or Harvard), African authors were significantly less likely to be first or lead authors despite the comparable number of academics on both sides of the partnership. To what can we attribute this discrepancy?

Dr. Bethany Hedt-Gauthier is a biostatistician in health systems research who focuses on optimizing health care and outcomes in sub-Saharan Africa.

Dr. Hedt-Gauthier describes the forms of capital that contribute to this issue, from cultural capital (ie references) to symbolic capital (ie legitimacy) and financial capital; however, it posits colonialism (and its continuity in socio-economic and political power dynamics today) as the root of this incongruity from which the aforementioned forms of capital bud and bloom like poisonous oleanders. In recent years, institutions including Duke have stepped up efforts to “decolonize” global health to achieve greater equity, equal participation and better overall health outcomes.

Dr. Hedt-Gauthier briefly chronicled some of her own research in Rwanda at the start of the COVID-19 pandemic. As part of her research partnerships, she remembers slowing down, engaging in thoughtful dialogue, and asking questions like, “Who is involved? [in the partnership]?” “Are all parties equally represented in the authorship of articles?” “If not, how can we share resources to ensure this?” “How can we ensure that those involved in the data generation are also involved in the interpretation of its results?” “Who has access to the data? “What does co-authoring look like?”

Investing time and energy in multi-country databases, funding collaborative research infrastructures, breaking down barriers within academia and training researchers are just some of the methods offered by speakers to facilitate equitable partnerships, the sharing and use of data, and the continued decolonization of global health.

Dr. Osondu Ogbuoji is Assistant Research Professor at the Duke Global Health Institute (DGHI) and Deputy Director of the Center for Policy Impact in Global Health at DGHI.

Dr Osondu Ogbuoji, the final panelist, says it best: “…We need to ensure that the people in the room discussing data values ​​are as diverse as possible and ideally have all parties stakeholders. In our own research, sometimes we think we have an idea of ​​what data to collect, but then we talk to the national partners and they have a totally different idea.

Although the question of data ownership may seem lofty or intangible, although the legality of data is confusing, although you may feel adrift in the debate over commodities and capital, the speakers threw you a lifeline , enter it and understand that generally:

It is necessary to approach the “data” in a communicative and critical way; it is necessary to build synergistic and reciprocal research partnerships; and, finally, there is a need to address global health through these partnerships to move the field forward towards greater equity.

Message from Alex Clifford, Class of 2024

Watch the recorded seminar here: https://www.youtube.com/watch?v=wRmFzif8a1c

Sean N. Ayres