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.

Photo (CC BY) Daniel Miller

For a project concerned with health and mid-life, menopause is an obvious target. What specifically does an anthropological perspective add, first to understanding menopause and second to envisaging a positive digital intervention? One key anthropological component, which is the comparative perspective, will have to wait until the team completes its research, but from my Irish fieldsite there are many possible insights. The challenge is firstly that no two women have the same experience. Menopause can start in your 30s or 50s. It can be almost symptom-free or have dramatic effects, some of which may never end.

The anthropologist will focus on the way medical issues are inextricable from the social context. The effect can be on close relationships. As a pharmacist told me, “Sometimes they come and say ‘I’m ready to kill my husband I think I’m going crazy’ very reassured when you say it could be the menopause”. Or women report that vaginal dryness makes it too painful to have sex. Women have told me that their mothers never mentioned menopause to them, or that they do or do not feel they can discuss the topic with their sister or close friends. Mostly they report that menopause is a topic that can only be broached through jokes. The impact might also be on wider relationships, such as to one’s work: “You might say to your colleague `could you just take over for a moment’ and then not explain why you would disappear, because you had a flush and you needed to remove yourself”.

Then there is the relation to wider medical authorities. Concerns about HRT or addictive sleeping pills may mean they prefer to consult complementary medicine rather than doctors. Knowledge seems to be a complete lottery, where some are well aware of the potential effects on bone density while others have never had anyone suggest this is something they might look into. Listening to women, within an ethnography, also alerts one to the considerable differences in perspective. One woman will give a feminist perspective about the need to rethink menopause as a celebration of a natural process, rather than merely a medical problem. While another, who is undergoing IVF and is desperate to have children, sees nothing to celebrate.

For us, the ASSA team, it is important that this same alertness to the social and wider context should manifest itself as the anthropological contribution towards delivering that will be of genuine benefit. One of the lessons from this research is that we need to see smartphone apps less as autonomous interventions and more as potential hubs. Different women will respond to different levels of information. There are those who are turned off by text and just want visuals, contrasted to those who want to read the medical journals. In my research so far, women have split equally between those who would prefer a discussion forum based on complete anonymity, to those who would only want to discuss these issues with people they can identity and feel some sort of relation to. In making relevant information more accessible all these factors need to be taken into account, but first and foremost comes listening to what a broad range of women say.