Analyze

At the height of the West African Ebola epidemic, West African governments and Mobile Network Operators (MNOs) were barraged with requests from international humanitarian and Western data analytics agencies to provide Call Detail Record data. This data could furnish the large-scale ambitions of data modelling to track and predict contagion. Despite its utility in tracking mobility and, as such, disease, CDR’s use raises many privacy concerns. In addition, embedded within a turn towards datafication, CDR technologies for surveillance embed specific ontologies of the data-focused society they emerge from. There is a false equivalence embedded in the relationship between humans and technology. The predominantly Western idea that one phone equals one person underlines the claim that CDR data accurately tracks distinct user movements, encoding a Western “phone self-subjectivity” (Erikson 2018). However, the refusal by some African actors to hand over sensitive mobile data to international agencies was met with forceful rhetoric of Africa’s moral obligation to comply—to forgo privacy rights in the name of ‘safety.’ The Ebola context reflects an emergent digitization of emergencies in the Global South, which is reshaping the way societies understand and manage emergencies, risk, data, and technology. The big data frenzy has seen a rising demand to test novel methods of epidemic/pandemic surveillance, prediction, and containment in some of the most vulnerable communities. These communities lack the regulatory and infrastructural capacity to mitigate harmful ramifications. With this emergence is a pivot towards 'humanitarian innovation,' where technological advancements and corporate industry collaboration are foregrounded as means to enhance aid delivery. In many ways, these narratives of innovation and scale replicate the language of Silicon Valley’s start-up culture. Surveillance of the poor and disempowered is carried out under the guise and rhetoric of care. In this scenario, market ideals and data technologies (re)construe social good as dependent on the “imposition of certain unfreedoms” as the cost of protection (Magalhaes and Couldry 2021). As big data technologies, they foreground a convergence of market logistics and global networks with existing and already problematic international humanitarian infrastructures (Madianou 2019). These convergences create new power arrangements that further perpetuate an unequal and complex dependency of developing countries on foreign organizations and corporations. Pushback against these data demands showcases competing notions of where risk truly lies. While resistance to data demands was at the state level, community responses to imposed epidemic regulations ranged from non-compliance to riots. These resistances demonstrated how the questions of ‘who and what is a threat?’ or ‘who and what is risky?’ and ‘to whom?’ experience shifting definitions in relation to these technologies as global, national, and community imaginaries are reinforced and reproduced as cultural, political, as well as biological units. 

Source

Akinwumi, Adjua. 2023. "Technological care vs Fugitive care: Exploring Power, Risk, and Resistance in AI and Big Data During the Ebola Epidemic." In 4S Paraconference X EiJ: Building a Global Record, curated by Misria Shaik Ali, Kim Fortun, Phillip Baum and Prerna Srigyan. Annual Meeting of the Society of Social Studies of Science.

(MNOs) were barraged with requests from international humanitarian and Western data analytics agencies to provide Call Detail Record data. This data could furnish the large-scale ambitions of data modelling to track and predict contagion. Despite its utility in tracking mobility and, as such, disease, CDR’s use raises many privacy concerns. In addition, embedded within a turn towards datafication, CDR technologies for surveillance embed specific ontologies of the data-focused society they emerge from. There is a false equivalence embedded in the relationship between humans and technology. The predominantly Western idea that one phone equals one person underlines the claim that CDR data accurately tracks distinct user movements, encoding a Western “phone self-subjectivity” (Erikson 2018). However, the refusal by some African actors to hand over sensitive mobile data to international agencies was met with forceful rhetoric of Africa’s moral obligation to comply—to forgo privacy rights in the name of ‘safety.’ The Ebola context reflects an emergent digitization of emergencies in the Global South, which is reshaping the way societies understand and manage emergencies, risk, data, and technology. The big data frenzy has seen a rising demand to test novel methods of epidemic/pandemic surveillance, prediction, and containment in some of the most vulnerable communities. These communities lack the regulatory and infrastructural capacity to mitigate harmful ramifications. With this emergence is a pivot towards 'humanitarian innovation,' where technological advancements and corporate industry collaboration are foregrounded as means to enhance aid delivery. In many ways, these narratives of innovation and scale replicate the language of Silicon Valley’s start-up culture. Surveillance of the poor and disempowered is carried out under the guise and rhetoric of care. In this scenario, market ideals and data technologies (re)construe social good as dependent on the “imposition of certain unfreedoms” as the cost of protection (Magalhaes and Couldry 2021). As big data technologies, they foreground a convergence of market logistics and global networks with existing and already problematic international humanitarian infrastructures (Madianou 2019). These convergences create new power arrangements that further perpetuate an unequal and complex dependency of developing countries on foreign organizations and corporations. Pushback against these data demands showcases competing notions of where risk truly lies. While resistance to data demands was at the state level, community responses to imposed epidemic regulations ranged from non-compliance to riots. These resistances demonstrated how the questions of ‘who and what is a threat?’ or ‘who and what is risky?’ and ‘to whom?’ experience shifting definitions in relation to these technologies as global, national, and community imaginaries are reinforced and reproduced as cultural, political, as well as biological units. 

Akinwumi, Adjua. 2023. "Technological care vs Fugitive care: Exploring Power, Risk, and Resistance in AI and Big Data During the Ebola Epidemic." In 4S Paraconference X EiJ: Building a Global Record, curated by Misria Shaik Ali, Kim Fortun, Phillip Baum and Prerna Srigyan. Annual Meeting of the Society of Social Studies of Science. Honolulu, Hawai'i, Nov 8-11.

1) “Repeatedly, I have been surprised by the impact that even lightly sketched case histories can have on readers.”

2) “But even the manifesto conceded that less formal expertise would remain important in the areas of practice that had not been subject to high-level testing. THAT confession covers much of the territory.”

The author conducted his research by personal experience and reference to case examples.

The main point of the article is that doctors need individual stories about patient success stories but that the current medical community has largely done away with this. His argument is that that are needed because of their impact on patients, their use in identifying problems like depression, knowing others have felt the same or have the same condition can give hope, and they can inspire research agendas.

Dr. Kramer refers to various people in various medical cases but redacts their names.

The Journal of the American Medical Association and the medical community as a whole embraced “evidence based medicine” back in the 90s and claimed that individual case stories were inferior, antiquated, and a thing of the past.

Oxford University press and the New England Journal of Medicine started writing case reports embracing stories.

The author addresses public health by making the case that “evidence based medicine” is not always there for every type of case nor is it always infallible. This effects emergency response where there are so many variables and there are no datasets, protocols, or studies for some cases.

1) “Repeatedly, I have been surprised by the impact that even lightly sketched case histories can have on readers.”

2) “But even the manifesto conceded that less formal expertise would remain important in the areas of practice that had not been subject to high-level testing. THAT confession covers much of the territory.”

I looked into how EMS operates in situations that are beyond protocols, standing orders, and medical control. I also looked into how story cases are used by other medical professionals. Further I looked into how “evidence” based approaches are formulated for studies and research.

• "For a variety of reasons, including a heightened awareness of medical error and a focus on cost cutting, we have entered an era in which a narrow, demanding version of evidence-based medicine prevails. "
• "No formal research can offer a 40-year lead-in or a 19-year follow-up. Few studies report on both symptoms and social progress. Research reduces information about many people; vignette retains the texture of life in one of its forms."
• "Beyond its roles as illustration, affirmation, hypothesis-builder and low-level guidance for practice, storytelling can act as a modest counterbalance to a straitened understanding of evidence."
• "We need storytelling, to set us in the clinical moment, remind us of the variety of human experience and enrich our judgment."