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Covid-19 and the cult of privacy

Daniel Miller30 April 2020

Recently a friend of mine caught Covid-19. He worked for the NHS. As it happens, the particular job he was carrying out could just as well have been done from home, but the NHS insisted he did it from the hospital because of GDPR regulations on data protection. In my book The Comfort of People, I argued that the single biggest cause of harm to hospice patients, other than their illness, was the insistence on confidentiality, as a result of which different members of their care teams failed to keep each other informed. When we give talks about how we hope to use our research to improve people’s welfare, the most common question asked is not how it might benefit the welfare of that population, but whether our proposals might intrude on privacy. What the hell is going on? When faced with what might seem initially to be inexplicable behaviour, anthropologists tend to use two procedures. Look for the underlying ideology and make sure that the discussion includes cultural relativism.

A common curse word in academia today is neo-liberalism, often used as a synonym for capitalism. Yet if the term is taken literally, it might have been more appropriate as a description of this cult of privacy. Liberalism was the movement that focused upon the individual who was ascribed inalienable rights as an individual. This ‘neo’ liberalism is founded in a core belief that individuals have an almost intrinsic human right to control all information about themselves. It is entirely different from the socialist ideologies that I was brought up with. These would have implied that if the state can enhance social welfare by collecting information about individuals, this automatically supersedes individual rights. The US and Europe are perhaps the staunchest proponents of rampant privacy. But they take different very forms. In Europe, it is promoted through bureaucratic regulation. The problem is that GDPR seems (to me) a justifiable weapon against the commercial exploitation of people as data, but it then gets extended so comprehensively that voluntary groups may struggle to operate and ethnography itself is threatened, due to difficulties with compliance. The EU failed to separate out its benign use from its malign use. By contrast, the way privacy rights have developed in the US seems more in keeping with the neo-liberalism of the political economy, an ideology associated with the freedoms of individuals and choice that are also used to legitimate contemporary capitalism. These rights are then pitched against the state ‘snooping,’ rather than becoming an instrument of state bureaucracy.

This extension of privacy into a foundational belief system has become hugely important today because of Covid-19. More particularly, it has become central to any debate about the potential role of smartphones in response to Covid-19. Last Sunday, the Australian government launched their covidsafe app. The UK has plans for an NHS app. These will allow a person’s smartphone to provide information on every other person they have been in contact with, which can then form the basis of contact tracing. The information will only be actually collected with permission and when that person has contracted the virus. Contract tracing based on apps in combination with interviews appears to be the key to the successful elimination of the virus.

We cannot be for or against privacy. It must be a question of the balance between care and surveillance, which was the subject of my last blog post. We can share Morozov’s horror of letting corporations, such as the combination of Apple and Google, trying to take control of these initiatives, while at the same time encouraging people to participate when apps are being launched by states that seem genuinely concerned with finding an alternative to lockdown.

At present so much of this is top-down technological solutionism. But my last blog post argued that ordinary people are constantly having to make their own decisions about the balance between surveillance and care as part of everyday life, when parenting their children or looking after frail parents. Our research provides evidence that ordinary people are therefore well-qualified to have a say in this political debate. Our evidence also suggests that to succeed, the adoption of these apps needs to come from bottom-up forms of dissemination, not top-down.

One result of respecting the views of ordinary people would be to recognise cultural relativism. It will not just be states, but also populations, that take different views on where the balance between care and surveillance lies. Presently, South Korea looks very different from Sweden, but both may be relatively consensual compared to more autocratic regimes. So we need to stop thinking that one approach is right, and one is wrong for those regions, and decide what is the least bad option for ourselves. Relativism will also apply to the passage of time. What is justified now may not be acceptable when a vaccine is available.  This is the time to insist that populations are allowed, through consulting, to have a say in creating the appropriate balance between care and surveillance that we are then going to be subject to.

Nurse navigators and WhatsApp: an example of ‘smart from below’

Alfonso Otaegui8 December 2018

Photo by Alfonso Otaegui

Within the scope of the project Anthropology of Smartphones and Smart Ageing (ASSA), we are committed to work collaboratively with a local mHealth initiative, or any initiative that will improve the access to healthcare or the wellbeing of the populations among whom we are carrying our fieldwork.

At the beginning, before even starting my fieldwork, I envisioned this initiative as the creation and implementation of a bespoke mHealth app, which would respond to a necessity observed in the field. This approach implied spotting a gap in the site –a need not yet addressed but noticed by the ethnographer– and creating an app which would fill that gap. It was certainly a top-down implementation approach: I would give the users something they needed but were not aware they needed.

After a couple of months, I realized it would be wiser to simply describe an app people already used in a creative way, and bring this local idea to another place, where this idea could be helpful. This approach, which could be described as ‘bottom-up’, implies acknowledging the creativity of local populations in the adoption of communication technologies, what Pype (2017) names ‘smartness from below’. With the same aim of bringing good ideas from one place to another, we have also started in our team to build up a list of ‘best practices’ in healthcare throughout all of our field sites.

With this aim in mind, I will spend the last six months of my fieldwork in Santiago doing ethnography at an oncological center in a public hospital. This particular hospital is the only public one in Santiago having implemented a ‘nurse navigator’ model of healthcare (Devine 2017).

The navigator nurses work as mediators between oncological patients and the medical and bureaucratical system of a public hospital in a low-income area. Cancer treatments mean two complexities for the patient: the medical complexity of the treatment and the bureaucracy of the public health system. Different cancer treatments can have several effects on different systems of the body, so managing the treatment implies handling a lot of information. The treatment is based on a series of procedures (image exams, chemotherapy sessions, blood tests, etc.) which require prescriptions and appointments, and have to be carried out in a specific order, and in certain amount of time (otherwise the probabilities of success decline). Navigator nurses actually manage the treatment for the patient, as they have the expertise to deal with both kind of complexities.

According to oncologist Bruno Nervi, president of the foundation Chile sin Cancer (‘Chile without cancer’), there are around 100 oncologists in Chile, when 400 are needed (55.000 people are diagnosed with cancer every year) (‘La Fundación Chile sin cáncer (…)’ 2018). Given the high number of patients, oncologists do not have the time to explain all the details of the treatment. The nurses working at the chemotherapy room face the same problem, as they try to fit in as many patients on a day as possible. The nurse navigators then, fill in this gap by educating the patient on the details of the disease and its treatment and mediate between the patient and the complex bureaucratical system of public healthcare in Chile. They make all the appointments for exams, blood tests and the like –which requires a lot of paperwork– and stay in touch with patient in case this has any doubt or question. These dedicated nurses constitute a human factor in healthcare that no app can replace. The nurse navigators, however, do use an app that is the most commonly used messaging app amongst patients: WhatsApp. According to the navigator nurses, WhatsApp gives them the chance to use various means of communication depending on the particularities and necessities of every patient: some prefer a phone call, some other need to see the info written in a text message, other will be reassured if they see a picture of the prescription or an exam order, some need an audio message they can listen to several times in order to understand the meaning (most of the patients are low-income people with low levels of education). Besides, nurse navigators are available for the patients for any doubt or question they might have. These nurses are there for them, to answer their questions and to comfort them, as the treatment and this relation of distant care can last for years.

Daniel Miller, principal investigator of the ASSA project, recommended in his last book ‘The Comfort of People’ on hospice patients and the use of new media, that it would important to create a patient/carer charter of new media use (2017: 218). The usage of WhatsApp by these nurse navigators actually follows a protocol which developed out of their experience in the last couple of years. I will attempt to describe this protocol and app usage and build up a model. I really hope it will be possible to bring this locally developed good idea to other public hospitals in Chile.

References

Devine, A. (2017, April 3). The Nurse Navigator: A Patient’s Compass On The Healthcare Journey. Retrieved from https://nurse.org/articles/nurse-navigator-career-path-salary-job-description/
La Fundación Chile sin cáncer y su contribución para cambiar la historia del cáncer en Chile. (2018, October 15). Retrieved from https://www.uc.cl/es/la-universidad/noticias/31765-la-fundacion-chilesincancer-y-su-contribucion-para-cambiar-la-historia-del-cancer-en-chile
Miller, D. (2017). The Comfort of People. Cambridge: Polity Press.
Pype, K. (2017). Smartness from Below: Variations on Technology and Creativity in Contemporary Kinshasa. In C. C. Mavhunga (Ed.), What Do Science, Technology, and Innovation Mean from Africa? (pp. 97–115). Cambridge, Massachussetts: The MIT Press.