Scientific Intimacy

The Changing Relationship with Medical Data at the Time of COVID-19 pandemic

in Anthropology in Action
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  • 1 Slovak Academy of Sciences, Slovakia ela.drazkiewicz@savba.sk

Abstract

As the coronavirus started to spread in Ireland, the epidemiological data became the most sought-after information in the country. This article will examine the ways in which COVID-19 redefined the intimacies of the relationships that health professionals and the members of the public have with medical data. It will focus on Irish examples and explore how the context of the pandemic turned numbers from abstract cognitive tools into important and affective tenets of social lives that dictated the moral values and conditions of sociality. It will examine the role of enumeration and metrics in mediating new forms of intimacy with state and society.

Unlike other high-profile state agencies, the Health Protection and Surveillance Centre (HPSC) in Dublin is located in the not-so-‘desirable’ area of Dublin 1, near Summerhill. It is easy to miss, as only a small plaque at the door signals that the national health agency is located inside. The location and the modest interior all suggest that the HPSC, while playing an important role in controlling disease in the country, does not enjoy the esteem of other high-profile institutions.

I had an opportunity to visit the HPSC in 2018, when I was researching conflicts over immunisation programmes in Ireland. During my fieldwork, the work rhythm of the office was dictated by its weekly scientific meetings. I remember joining this session for the first time. Feeling isolated in my quiet office in the basement, I was looking forward to the scientific meeting. The meeting started without any delay, and for the next 20 minutes or so, on the big screen, we observed a large table and the occasional diagram with the latest data on infectious diseases. In a systematic way, row by row, a presenter was listing new cases of measles, mumps, listeriosis, chickenpox, rubella, salmonella, Hepatitis A, Hepatitis B, Hepatitis C, HIV, Zika … the list went on and on. I remember sitting in the room and thinking: ‘What the hell have I gotten myself into?’ The numbers meant nothing to me, and I soon started to question my choice of research topic and field site.

I turned my attention from the presentation to the audience. In a professional manner, staff members were attentive to data. Yet, after the presentation was over, after very few questions, no one stayed to ‘continue the conversation’. The room was empty in no time, and everyone rushed back to their desks to fulfil their duties.

In the following weeks, I had the opportunity to attend more of these meetings. Things did not change. I still could not get excited about the surveillance data, about the repetitive tables and charts summarising new outbreaks and infections.

Two years later, in March 2020, I was sitting in my bedroom, glued to my phone and fixated on the data updates on the HPSC webpage. I searched through the database of the European Centre for Disease Prevention and Control and other international and national public health protection agencies. The numbers, the data, were everything that mattered now. I dreamt of the opportunity to join those weekly scientific meetings again. Yet, I was constrained by lockdown regulations in Ireland; I had to adjust all my courses to the online environment, attend endless online meetings and mark a few hundred papers while home-schooling, entertaining and catering for my two young daughters. There was no way I could leave my house, as the government had put a strict ban on movement. The only thing I could do was watch, from my laptop, the people I knew from my old field site presenting their data from governmental offices, accompanied by the members of the government. Clearly, they were no longer a sidelined institution, but the most essential service in the country. The briefings regarding the surveillance data were televised at prime time and on the main news channels. They were watched by thousands. The data the HPSC collected was on the first pages of every newspaper. It was discussed emotionally in the daily conversations of lay people and circulated on social media. COVID-19 arrived in Ireland and made everyone fall in love with numbers and build an intimate relationship with medical data like never before.

This article will analyse the structures that enabled the newly formed intimacy with numbers and data at the earliest stages of the COVID-19 pandemic. Focussing mostly on Ireland, I will examine how the intimacy with numbers and epidemiological data was used as a central component of governing the Irish population during the pandemic, and how in the process numbers gained a new affective nature. They were no longer simple cognitive tools but instead important tenets of social, moral and political lives.

Numbers and Crises

In the Western world, numbers are seen as abstract, universal codes that are free from the burden of culture, values and affects. There is nothing intimate about them. Intimacy is about ‘social relationships that are – or give the impression of being – physically and/or emotionally close, personal, sexually intimate, private, caring, or loving’ (Constable 2009: 50). This is not what impersonal numbers are about. Numbers are also not immediately associated with anthropology. Playing with numbers is what sociologists do, but not us. Joel Robbins (2013) argues that anthropology today is dominated by the ‘suffering slot’ ethnography, which centres on the subject living in pain. The goal of such anthropology is often driven by the opposition to numbers, the need to move beyond statistics, the urge to show the human face of suffering, to focus on its experience and consequences. But when Sharon Abramowitz (2014) suggested ‘ten things that anthropologists can do to fight the West African Ebola epidemic’, learning how to count dead bodies was the first point on her list. It seems to be the nature of health crises to render numbers – those abstract objects – into the most important signifiers of life and death, of changed social relations and cultural norms.

Learning through Numbers

Data collection and medical surveillance are essential from the epidemiological point of view: this is how scientists and medical professionals learn about the potential risks to public health. But, as Charles Briggs (2004) notices, during epidemics the official medical knowledge differs strongly from the lived and localised experiences of risk, health and illness. For lay people, numbers are usually only a secondary source of information, often highly detached from their experiences. Those directly affected by the epidemic realise the risk by experiencing illness and death first-hand, amongst family members, friends and neighbours, by experiencing the impact of the epidemic on their social lives and household economics. But the varied effects that SARS-CoV-2 has on individual bodies, ranging from no symptoms to death, results in highly diverse experiences of the disease. In early March 2020, the social impact of the pandemic was still unknown.

On the other hand, those who are not directly impacted by the crisis usually learn about it and build their connection with it through health and humanitarian organisations as well as through the media. In order to generate feelings of compassion, aid organisations and journalists usually resort to ‘personal stories’ and graphic images from affected areas (Benthall 2010; Redfield 2013). Most epidemics and disasters have their ‘iconic imaginary’: the face of the 1990s AIDS epidemic in the United States became David Kirby photographed by Therese Frare; the symbol of the famine in Somalia in 1992 was a starving woman waiting to be taken in a wheelbarrow to the feeding centre who was photographed by James Nachtwey.

But the COVID-19 pandemic has been different in that regard. With the exception of very few photos from Wuhan, a few photographs and videos recorded on mobile phones and documenting the overcrowded waiting areas of Spanish hospitals, or a line of military trucks driving through Italian Bergamo to assist with the transportation of dead bodies, there were very few images denoting the severity of the COVID-19 pandemic. Anderson Cooper, a CNN correspondent with vast experience in reporting from humanitarian sites, noted that the COVID-19 pandemic differed from other emergencies he had reported on. During the earliest stages of the pandemic, ‘there weren't any cameras in the hospital rooms, or family members couldn't see their loved ones at the end … so you knew there was this battle going on behind the walls of the hospital but you didn't actually see it, unlike in the case of Hurricane Katrina or the earthquake in Haiti, where because of cameras everybody felt like they were there’ (Colbert and Cooper 2020). Without a doubt, the pandemic confirmed a double standard in reporting emergencies taking place in the privileged sites of the Global North versus its peripheries and the Global South. While the victims suffering in New York or Dublin were granted privacy and dignity, the same privilege was not allotted to those suffering in Brazil or China. While in the Western media the images illustrating the pandemic at home focussed on the health workers, analogous reporting from the Global South focussed on victims and suffering. This reporting bias deserves scrutiny. However, what I want to focus on here is how both mediated and direct experience of the disease, for many, could result in a disconnect from the pandemic.

When documenting French humanitarian ‘regimes of care’, Miriam Ticktin (2011) noticed that ill bodies, in order to be recognised as morally legitimate and deserving of care and support, needed to bear their marks of suffering and to be seen as sick, disabled or damaged. But when people infected with SARS-CoV-2 are locked down at home, suffer isolated in hospitals and nursing homes, or go through the infection with mild or no symptoms, it renders the illness invisible. So how can the feeling of care and the sense of urgency be created? How do you render an invisible, unknown, abstract illness into a meaningful issue worthy of the strict lockdown?

Communication problems in medical emergencies are not new. However, usually the problem that epidemiologists face concern communicating established medical knowledge to lay communities (Pigg 2001). But in this specific pandemic, characterised by the lack of an understanding of how the disease is transmitted and how it can be treated, there was a profound lack of established medical knowledge. The only thing that was known were numbers. Even though the official data concerning the pandemic has been often contested, still, in most cases, the way in which we learnt about the disease and its risks was through statistical data: numbers of confirmed cases, numbers of tests done, recovered cases, patients in ICU, numbers of deaths, number of deaths in seniors, in children. The lists goes on. The surveillance data that only a couple of years ago was irrelevant to me and most people in the Republic now had tremendous ordering power, turning the unknown and messy reality of the pandemic into a more familiar, comprehensible entity. Data became the primary platform for making sense of the disease. Numbers became our first point of connection with the disease and the pandemic, and the foundation of our relationship with them.

Wendy Espeland and Mitchell Stevens (1998) argue that one of the fundamental ways of making sense of the world is through commensuration – the transforming of qualities into quantities. In this process, numbers become an important tool of decision-making and rationalisation. But in early March 2020, soon after the virus arrived in Ireland, the ‘qualitative’ knowledge of the pandemic, the first-hand experience, was yet to be gained. In this context, the rationalisation of the health protection measures took place through reversed commensuration: transforming quantities into qualities. Surveillance data had to be loaded with feelings, emotions and affects. In that process, infection numbers, death ratios, recovery cases, R-value, all of them became vehicles for expressing ideas about the illness and its risk for the population of the Republic.

Living by Numbers

At the earliest stages of the pandemic, epidemiological data mediated an intimate relationship with the disease. Just as new technologies facilitate intimate relationships (Attwood et al. 2017), epidemiological data now facilitated a ‘personal connection’ with the disease that for many people was still distant, invisible and unknown. We learnt about the disease by listening to the surveillance briefings, reading tables, analysing charts, and holding our breath while observing the chart with the infamous ‘curve’: is it flattening yet or not? In spite of the specific ‘invisible’ nature of the disease, intimate connection with the illness, statistical data was enough to enforce high compliance with severe lockdown regulations, to generate concern, fear or maybe sometimes even anxiety.

The effectiveness of numbers in generating those feelings and promoting certain behaviours should not be surprising. Irish capitalism is well-accustomed to numbers, paving the way to what Max Weber (1976) called the ‘romanticism of numbers’. Yet when the economy was ‘shut down’, epidemiological data replaced Euros as the main currency. Furthermore, modern medicine has conditioned us to ‘live by numbers’ (Oxlund 2012). As Kathleen Woodward (2009) argues, in highly privatised health-care systems, medical data is frequently used to induce ‘statistical panic’ in order to generate strong uptake and acceptance of costly insurance services. Unlike other European systems, Irish health care depends strongly on private care. ‘Statistical panic’ is a mechanism that is well ingrained in the society. Therefore, even though the specific, pandemic-related statistics may have been novel, the mechanism connecting health, data and risk resonated well with the public. Further, as Woodward notes, living and being governed by numbers results in anxiety, which, in the case of the COVID-19 pandemic, proved to be an effective way of forcing people to obey the strict rules of the lockdown. Our relationship with data may have been an abusive one, but we stayed in it to ‘save’ lives.

Another way in which the numerical expressions of health, body and illness were familiar to many people even before the pandemic was through preventive medicine. In the last two decades, measurement technologies monitoring our exercise, movement, calorie intake, heart rate, menstrual cycles, sleep and other bodily functions have been increasingly incorporated into our lives to help us govern our health. As Deborah Lupton observes, ‘using self-tracking technologies encourages people to think about their bodies and their selves through numbers’ (2013: 14). The production of such data is seen as the best way of assessing and representing the value of one's life and ‘self-knowledge’. During the pandemic, numbers became a vehicle for knowing not only the individual but the collective self and assessing the value of whole societies. Epidemiological numbers became a way of evaluating our degree of sociality and our commitment to social contracts of caring for and protecting one another. Like Lupton, Bjarke Oxlund (2012) also notes that self-tracking technologies have turned health issues into moral issues, where ‘good health’ has become a moral imperative. When the pandemic arrived, we were already well tuned in to living by numbers and used to associating taking care of health with high morals and self-discipline. We were already groomed for our intimate relationship with data.

Governing by Numbers

During the pandemic, numbers became vehicles through which individuals related to the disease. But they also became a vehicle for mediating and regulating intimacies with the state. Michael Kravel-Tovi and Deborah Moore (2016) show very well how obsession with enumeration produces highly emotional states and societies highly invested in self-regulation. Numerical endeavours are always underpinned by the goal of controlling populations. In Ireland, the context of this pandemic elevated those efforts to a new level. At the strictest stage of the lockdown, not only were all child-care and educational facilities closed, but all travel was also restricted. Only those who were providing essential services (and could not provide them remotely) were allowed to leave their homes. Consequently, all but essential services were closed. By late July, only a few restrictions had been eased, and new social measures were introduced (face coverings, regulation of social visits and public gatherings, etc.).

Epidemiological data created new intimate relationships with the state, increasing its capacity to shape people's sense of what can be considered ‘personal’ and ‘private’ and what can be seen as a public matter (see also Sehlikoglu and Zengin 2015). During the pandemic, numbers dictated what forms of intimacies and interactions would be recognised by the state as essential and permitted. The state has always controlled intimate relationships, marriage, and sexual life. Yet now, the matters of conjugality, family and domesticity were not only politicised but also medicalised, and all regulations were justified by numbers.

However, as Sertaç Sehlikoglu and Aslı Zengin point out, ‘the entangled relationship of intimacy and nation-state shows itself also in discourses and practices of national inclusion and identification’ (2015: 21). The work of Kravel-Tovi (2018) demonstrates how enumeration plays a central role in that process. The redefined-by-COVID-19 intimacies with medical data provided a space for reinforcing national identities. This was most visible in the constant comparison of medical data between countries. When Elaine Doyle (2020), an Irish researcher, published an article asking why COVID-19 was killing many more people in the United Kingdom than in Ireland, it went viral, becoming a new weapon in the historical rivalry between the two states. When Irish ‘numbers’ did not look favourable in comparison with other countries, the frequent explanation was the supposedly more honest and reliable reporting system of the Irish HPSC (O'Sullivan 2020). Paradoxically, in the time of the COVID-19 pandemic, even death tolls became a reason for national pride. As the 2020 Olympics were postponed, the pandemic took its place as a new arena for international competition, and playing with COVID-19 numbers became a main discipline.

Intimacy is about connections and boundaries. A pandemic – a highly globalised event – became an important trigger for redefining matters of belonging and exclusion. ‘We are all in this together’ – argued a popular slogan in the English-speaking world. However, as some countries decided to close borders for non-nationals, ‘we’ became a strictly limited category based on citizenship and residency rights. Throughout the earliest, most severe stages of the pandemic, Ireland did not close its borders. The European-Union-wide travel ban and geographical isolation were enough to protect those residing on the small island from imported cases. However, significantly, the moment other EU countries eased their travel restrictions, Irish authorities imposed quarantine obligations, and continued to discourage their residents from leaving the island. At the same time, the memorandum of understanding between the Irish government and the Northern Ireland executive (7 April 2020) was signed following intensified calls for a whole Ireland approach in dealing with the pandemic and expressing some of the longings for a unified Ireland.

Throughout the pandemic, numbers proved to be more than just cognitive tools for capturing the disease. They also became more than just a sociological technique of governance. The pandemic allowed numbers to materialise themselves. They became important tenets in our medical, social, political and moral lives. They built our relationship with the pandemic. In the process, they turned a medical issue into a national pursuit.

Tired by Numbers

On the 10 May 2020, the Irish Health Service Executive (HSE) released a social campaign ‘Hold Firm’, encouraging people to comply with pandemic regulations (HSE 2020). Significantly, unlike previous communications, this one did not emphasise numbers. Instead, it was based on the poem ‘Take Care’ (1993) by the highly popular President of Ireland Michael Higgins. In the earliest stages of the pandemic, the poem was popularised by the RTE (a national broadcaster), and went viral amongst social media users:

In the journey to the light,
the dark moments
should not threaten.
Belief
requires
that you hold steady.
Bend, if you will,
with the wind.
The tree is your teacher,
roots at once
more firm
from experience
in the soil
made fragile.
Your gentle dew will come
and a stirring
of power
to go on
towards the space
of sharing.
In the misery of the I,
in rage,
it is easy to cry out
against all others
but to weaken
is to die
in the misery of knowing
the journey abandoned
towards the sharing
of all human hope
and cries
is the loss
of all we know
of the divine
reclaimed
for our shared
humanity.
Hold firm.
Take care.
Come home
Together.

Inspired by this poem, the HSE video was encouraging the public to follow the rules of the lockdown through the following lyrics:

This isn't us
Staying away from everyone,
and saying no to Sunday dinners,
and Monday night training.
Saying yes to rules
And following them.
This isn't us.
Keeping the kids in,
The nights in, the days in.
Keeping our distance as we walk by.
This isn't us.
Except, this IS us.
Because we're doing this, for us.
For everyone.
This is us.
Us at our best.
Our most decent.
Taking care of each other,
Leaving no one behind.
This is us.
Knowing what we have to do.
And doing it.
Knowing that we are not there yet
But that we will get through.
Together.
Because, well
This is us,
Hold firm’.

Voiced by multiple actors, with distinct Irish accents representing the diversity of Irish regions (yet failing to include migrant populations), the advert resonated with national self-stereotypes describing the Irish as rebellious and resilient yet kind, decent and caring about one another. It played out family values through evoking Sunday dinners. Through bringing up evening practice, it resonated with the national GAA (Gaelic Athletic Association) sport culture. The numbers did the unthinkable: they proved to be more than just cognitive abstract tools, and became affective technologies effectively connecting the pandemic with national values and cultural intimacy (Herzfeld 1997).

But once this job was done, after a few months of living by numbers the power of numbers’ started to wane. As Kravel-Tovi (2018) observes, the language of numbers and a strong emphasis on enumeration can conceal or divert attention from other, also significant concerns. And as the pandemic progressed in Ireland, so did other (non-epidemiological) concerns started to rise. An example is the Irish job market. The standard measure of monthly unemployment in the country was 5.6 per cent in May 2020. But a new COVID-19-adjusted measure of unemployment indicated a rate as high as 26.1 per cent in that same month (CSO 2020). Driven by numbers, fighting COVID-19, thousands of people lost their jobs. The impact on other life domains – mental well-being, education, domestic violence, non-COVID-19-related health services – is still to be analysed. Yet, without a doubt, by May 2020 it has already been felt ‘on the ground’, at homes, and amongst families, friends and neighbours. As people started to build their first-hand experiences of the pandemic, the mediation of numbers became redundant and less appealing. As the experience of the pandemic was not always ‘medical’ and centred on health, illness, death or suffering, but instead often primarily social or economic, the high medicalisation of the crisis became increasingly contested. The love affair with data started to phase out. Numbers once again lost their appeal.

References

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Contributor Notes

Elżbieta Drążkiewicz is a researcher at the Institute for Sociology, at the Slovak Academy of Sciences. She specialises in organisational, political and economic anthropology. Her research includes studies of foreign aid and development management, public health governance, and education systems. Her current focus is the intersection of science, the state and health economies, particularly with regard to vaccination and the ways in which citizens, health professionals and state officials negotiate their own, often conflicting, agendas. E-mail: ela.drazkiewicz@savba.sk https://orcid.org/0000-0001-9277-5353

Anthropology in Action

Journal for Applied Anthropology in Policy and Practice

  • Abramowitz, S. (2014), ‘Ten Things that Anthropologists Can Do to Fight the West African Ebola Epidemic’, Somatosphere, 26 September, http://somatosphere.net/2014/ten-things-that-anthropologistscan-do-to-fight-the-west-african-ebola-epidemic.html/.

    • Search Google Scholar
    • Export Citation
  • Attwood, F., J. Hakim and A. Winch (2017), ‘Mediated Intimacies: Bodies, Technologies and Relationships’, Journal of Gender Studies 26, no. 3: 249253, doi:10.1080/09589236.2017.1297888.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Benthall, J. (2010), Disasters, Relief and the Media (Wantage, UK: Sean Kingston Publishing).

  • Briggs, C. L. (2004), ‘Theorizing Modernity Conspiratorially: Science, Scale, and the Political Economy of Public Discourse in Explanations of a Cholera Epidemic’, American Ethnologist 31, no. 2: 164187, doi:10.1525/ae.2004.31.2.164.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Colbert, S., and A. Cooper (2020), ‘Anderson Cooper: Trump Hijacked the Coronavirus Task Force Briefings’, The Late Show with Stephen Colbert, YouTube, 7:17, 5 May, https://www.youtube.com/watch?v=AHFl1zp48f8.

    • Search Google Scholar
    • Export Citation
  • Constable, N. (2009), ‘The Commodification of Intimacy: Marriage, Sex, and Reproductive Labor’, Annual Review of Anthropology 38, no. 1: 4964, doi:10.1146/annurev.anthro.37.081407.085133.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • CSO (Central Statistics Office) (2020), ‘Press Statement: Monthly Unemployment May 2020’, 3 June, https://www.cso.ie/en/.

  • Doyle, E. (2020). ‘Why Is Coronavirus Killing so Many More People in the UK than Ireland?The Guardian, 14 April, https://www.theguardian.com/commentisfree/2020/apr/14/coronavirus-uk-ireland-delay.

    • Search Google Scholar
    • Export Citation
  • Espeland, W. N., and M. L. Stevens (1998), ‘Commensuration as a Social Process’, Annual Review of Sociology 24: 313343, doi:10.1146/annurev.soc.24.1.313.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Herzfeld, M. (1997), Cultural Intimacy: Social Poetics in the Nation-State (London, Routledge).

  • Higgins, M. D., & Mulcahy, M. (1993). The Season of Fire: O'Brien Press, Limited.

  • HSE (Health Services Executive) (2020), ‘New HSE Campaign #HoldFirm’, Health Services Executive, 10 May, https://www.hse.ie/eng/services/news/media/pressrel/new-hse-campaign-holdfirm.html.

    • Search Google Scholar
    • Export Citation
  • Kravel-Tovi, M. (2018), ‘Accounting of the Soul: Enumeration, Affect, and Soul Searching among American Jewry’, American Anthropologist 120, no. 4: 711724, doi:10.1111/aman.13123.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Kravel-Tovi, M., and D. D. Moore (2016), Taking Stock: Cultures of Enumeration in Contemporary Jewish Life (Bloomington: Indiana University Press).

    • Search Google Scholar
    • Export Citation
  • Lupton, D. (2013), ‘Quantifying the Body: Monitoring and Measuring Health in the Age of Health Technologies’, Critical Public Health 23, no. 4: 393403, doi:10.1080/09581596.2013.794931.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Oxlund, B. (2012), ‘Living by Numbers’, Suomen Antropologi: Journal of the Finnish Anthropological Society 37, no. 3: 4256, https://anthropology.ku.dk/research/new_publications/living-by-numbers/.

    • Search Google Scholar
    • Export Citation
  • O'Sullivan, K. (2020). ‘Making sense of conflicting data around Covid-19 deaths’, The Irish Times, 30 May 2020, https://www.irishtimes.com/news/health/making-sense-of-conflicting-data-around-covid-19-deaths-1.4265947?mode=sample&auth-failed=1&pw-origin=.com%2Fnews%2Fhealth%2Fmaking-sense-of-conflicting-data-around-covid-19-deaths-1.4265947.

    • Search Google Scholar
    • Export Citation
  • Pigg, S. L. (2001), ‘Languages of Sex and AIDS in Nepal: Notes on the Social Production of Commensurability’, Cultural Anthropology 16, no. 4: 481541, doi:10.1525/can.2001.16.4.481.

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