By Alfonso Otaegui, on 8 December 2018
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.