Studying the Datafication of Health Information During a Pandemic: the Importance of Recognizing Outside Events

I am a Laidlaw Scholar going into my third year at the University of St Andrews studying Social Anthropology and Psychology. I just finished my first five weeks of research in anthropology and would like to share some of the reflections that this research process has prompted.

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Like everyone else, many aspects of my daily life were turned upside down as a result of the COVID-19 pandemic. This came to affect the context in which I carry out my research project and shine a light on aspects of leadership within the research process that I might not have considered otherwise. When writing my research proposal last fall, I could never have imagined the context in which I would be carrying out my five weeks of summer research. In fact, I had hardly given the possibility of outside factors interrupting my research any thought at all. My Laidlaw project rooted in some lectures I had during my first year, which prompted me to think about how an anthropological approach can inform our relationship to technology. I have been studying the datafication of health information. And it, therefore, also comes to shine a light on the complex interaction between the body and technology, and the spaces of power and agency within such a relationship. I choose to focus on the datafication of health information and study how Danish young adults employ digital health technologies, and how this use comes to shape their relationship to their bodies.

 

I was quite lucky: the COVID-19 pandemic did not come to change the logistics around my research. In a way, the global pandemic highlighted to me the importance of better understanding the area in which I was doing research. All of a sudden, my research was incredibly relevant, and something upon which was reflected upon both on a personal and societal level. As an official app launched by the government to track individuals’ movement to determine COVID-19 infection risk, the dilemma between giving away data and health benefits was a controversial and highly debated issue. People starting posing themselves questions that were central to my research: To what extent can data be misused? Can the authorities be trusted to not misuse the data? Do such risks outweigh the consequences? All of a sudden people became acutely aware of the opportunities as well as limitations caused by our reliance on digital technologies to socialize, learn, participate in democratic conversations and many other aspects of life.

 

Its explicit and direct relevance to current issues in the world added weight to what I was doing. It came to highlight the responsibilities of someone doing research in this area: not just because it served as a reminder of why this research is important, but also because it’s the ability to affect people’s lives in very direct ways became clear. The connection between leadership and research became explicit – my position as a researcher that collects and interprets data that affect people’s daily lives, both means that I have a responsibility to represent people accurately and respectfully, as well as being aware of who is excluded from having access to the data. I realized that leadership in this context meant giving space and being aware of my positionality as a researcher in relation to my informants – and taking responsibility for the difficulty this might pose of the research process, and explicitly acknowledge this in my findings. In the context of a global pandemic, this meant recognizing the ways this might impact individuals and their relationship to technology and adapting my research methods as a result of this. While these considerations are central to the anthropological method, the current world situation and its connection to my research made it even clearer. It came to shine a light on the importance of considering how outside factors influence the research process and viewing research in relation to, and conversation with, these outside factors.

 

I was very unsure of whether to directly address the COVID-19 app launched by the Danish government. On one hand, it was directly relevant to what I was studying. On the other hand, I worried about entering such a heated and polarizing debate so directly. However, all of my informants referred to the COVID-19 pandemic and often mentioned how their use of health technologies changed during the quarantine. It, therefore, did come to play a role in the conversations, as it was something on the mind of my participants and something which affected their daily life and viewpoints in profound ways.

 

Although the logistics of my research was not influenced by the COVID-19 pandemic, and I was able to carry it out how I would have, it also did come to change my research, as it affected mine as well as my informants’ lives. To me, this highlighted the importance of actively recognizing this within the research process. Being a researcher and a leader is inherently interconnected. As a leader, one needs allows space to listen and allows space for considerations of factors that affect other people. This related directly to how one, as a researcher, should not view the research process as a vacuum that is removed from social reality, and recognize the outside factors influencing you as well as the people you are working with.  

 

Many of my most productive reflections upon this project happened when I extended beyond the academic context from which it was born. I believe the ability to be open, to consider new perspectives and listen to diverse, perhaps sometimes critical, voices are a fundamental element of research. This requires the consideration of how current aspects of the world around you impacts your research. I am speaking from an anthropological perspective, but I do think this is relevant to other disciplines as well. Research processes do not exist in a vacuum – they are in constant conversation with the world surrounding it. Recognizing such has the potential to inform the research process, as well as to engage more ethically as a researcher and leader in society. 

 

I want to wholeheartedly thank everyone involved in giving me this opportunity. Firstly, I would like to thank my supervisor, Dr Huon Wardle, for agreeing to supervise me and introduce me to the world of anthropological research so early on in my degree. Secondly, I would like to the Laidlaw Team for supporting me as well as offer so many opportunities to learn about leadership. Lastly, I would like to thank Lord Laidlaw for making this opportunity possible for me in the first place, and for investing in young people and our education.

 

Image: Advertisement of the app that sparked many discussions and reflections in Denmark. SmitteStop, 2020. [image].

Anna Louise Todsen

Student, University of St Andrews

I am a UWC alumni and a second-year student at the University of St Andrews. I am pursuing a degree in Social Anthropology and Psychology and I am interested in how these subjects can inform intercultural processes and inspire social change. My Laidlaw research is in Anthropology, where I am researching the process of datafication of individual's health information shared on self-tracking applications. In many cases, the ownership, analysis and utilization of such data can mean that sensitive information about individuals' bodies is commodified and implemented into large data networks. However, the usage of these technologies also offers space for individual agency. I wish to explore the relationship between individual agency and power structures within the process of datafication of health information.

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