An example of a desire path, a consequence of erosion due to people walking on it rather than taking the pre-designed path. Photo licensed under the Creative Commons Attribution 2.0 Generic license

A few weeks ago, I was invited to mentor a startup. They used the term mentorship, but it was more like an informal talk. They are developing an app to help relatives coordinate the care of their elderly parents. Their motivation for this is genuine. The founders are three siblings who had a hard time when they found themselves having to take care of their mother, who had dementia, for several years. They believe they have learned a lot from their experience and they could help other families by combining all the resources they needed as caregivers into a single app. They did a great job. The app is a combination of a calendar for medication and doctor’s appointments, a chat feature the family can use to talk, a channel for checking health information, another channel that can be used to connect with doctors and caregivers and a function that provides reliable, trustworthy information and medical guidance. They also invited one of the most respected researchers on health and ageing to support them with the development of this tool. So, why do I think this app might fail?

During the ASSA project, I conducted a 16-month ethnography with older people in Sao Paulo. At the beginning of fieldwork, I was expecting to find people using apps specifically designed for health and care. Instead, I found people using WhatsApp to create groups to coordinate the care of relatives and to get medical guidance from friends. WhatsApp is the main means of communication among Brazilians who own a smartphone, so the decision to place conversations addressing health and care onto the platform seems natural, especially among older people, as sometimes, WhatsApp is the only app they feel comfortable with. Centralising multiple tasks on WhatsApp means they don’t have to install a new app. This is relevant because, due to many older people using a second-hand device, mobile phone memory can be a problem. Moreover, the process of downloading an app is itself one of the things that they find can make them feel like they have got stuck. Even if they succeed in downloading a new app, they may face constraints related to the adoption of new technology. As one of my research participants said: “you don’t change a winning game”. They just feel like they are at home when they are using WhatsApp.

That is not the case of the three startup founders I am talking about. They are young and technology is not a barrier to them. However, most of the siblings I met who were taking care of elderly parents were middle-aged. This demands an exercise of empathy, which is not just about identifying what caregivers need. It is crucial to consider where they would like to find what they need. It is important to learn how and where (in which app) they get things done. The eureka moment should then come when developers understand how to improve and add value to the choices the users have already made. Katrien Pype called this ‘smartness from below’[1].

In my research, I work with the term “desire path”[2]. In a park, for example, the desire path is the path users create by choosing a route that is different from the one designed by planners. The desire path is the materialisation of the free will. It can be seen as a kind of disobedience, but there is something really valuable about this unpredictable preference. Observing the desire path is an opportunity to learn what users feel is more appropriate for the experience they want. In that sense, taking the desire path into account can save resources and time and might be a good short cut to succeeding in the challenge of designing an app people are actually willing to use.

Because the app they are planning to develop contains an in-built calendar, one of the questions I asked the startup’s founders was whether they would normally use a calendar other than Google. They said they wouldn’t. So why assume their users would use something different to what they are used to? It is easier to integrate the schedule that caregivers need to keep track of the care they provide (sometimes across multiple family members) into the calendar they already use in their day to day life, rather than persuading them to adopt a new one. In that case, Google Calendar is the desire path and app developers are the ones who should adapt their journey to the use of it. The same occurs with WhatsApp. Based on this experience as well as my observations during fieldwork in Sao Paulo, investigating how doctors, clinics and insurance health plans in the city were using WhatsApp for health purposes, I developed a series of protocols for clinics and hospitals showing how WhatsApp can be used to facilitate their communication with patients when it comes to patient triage, the provision of medical care and patient education. These protocols were published under the title “Learning from WhatsApp: Best Practices for Health” (you can download this for free here). In the 150 pages of the book, I haven’t invented anything. It is just simple and pure WhatsApp. My work was to learn with people and systemise the steps.

Figure 1: Example of how WhatsApp might be used to coordinate remote care. In this case, the nurse in charge of interacting with patients via Whatsapp uses the ‘star message’ function to indicate that the patient’s query is pending, so she can go back to the patient after the image is seen by the doctor. Source: ‘Learning from Whatsapp: Best Practices for Health’, by Marilia Duque.

I also published another book called “WhatsApp for Nutritionists” (the book was only published in Portuguese and it is available here). The book is a result of a project I worked on where my challenge was to rebuild the kind of food diary[3] a bespoke m-Health app provides but using only WhatsApp features. The intervention’s effectiveness was tested by having older people assisted by the UNIFESP Medical School in Sao Paulo trial the new method. Participants were invited to take a picture of everything they ate and drank every day and shared this with the nutritionist via WhatsApp. They didn’t have to learn anything new and neither did the nutritionist, as both were already WhatsApp users. This way, the medical school didn’t have to develop an additional app in order to create a reliable method for assessing dietary requirements and needs. It was a successful and cost-effective intervention.

Figure 2 and 3: Examples of how Whatsapp can be used for nutrition purposes – the user sends the nutritionist a photo of all of their meals, thus creating a visual log of their nutritional intake for the day. These are examples of how nutritionists can visualise a patient’s food diary on their mobile and on WhatsApp Web. Source: WhatsApp® Aplicado à Nutrição, by Marilia Duque.

I do think the app I was invited to talk about is far better than WhatsApp, and it should be, as it was designed specifically for health purposes by people who have experience in the problem they want to solve. My point is that there is no guarantee people will use it. That is why my advice is to observe, learn and respect the desire paths taken by potential users before developing something new. They are the choices people have already made.

[1] Pype, Katrien. “Smartness from Below: Variations on Technology and Creativity in Contemporary Kinshasa.” What Do Science, Technology, and Innovation Mean from Africa?, edited by Clapperton Chakanetsa Mavhunga, The MIT Press, 2017, pp. 97–115.

[2] https://www.theguardian.com/cities/2018/oct/05/desire-paths-the-illicit-trails-that-defy-the-urban-planners

[3] RUCKENSTEIN, M. (2015). Uncovering Everyday Rhythms and Patterns: Food tracking and new forms of visibility and temporality in health care. Techno-Anthropology in Health Informatics: Methodologies for Improving Human-Technology Relations, 215, 28-40.

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.