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Read this before developing an mHealth app: tips on saving time and money by walking in other people’s shoes

Marilia Duque E S15 September 2020

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.

 

Coronavirus and social isolation: 16 insights from Digital Anthropology

Georgiana Murariu20 March 2020

Source: Unsplash https://unsplash.com/photos/tDtwC11XjuU

Blog post by ASSA (Anthropology of Smartphones and Smart Ageing) team

We recently conducted nine 16 month studies on the use of smartphones by older people, which is the main source of insights here. You can read more about the project here.

This is a summary of insights from our previous research intended to be on benefit for individuals or institutions considering  digital health initiatives for older people. It is a preliminary list and we hope to deepen our contribution through subsequent blog posts.

Additional insights are also drawn from Daniel Miller’s The Comfort of People (Polity, 2017), a book about the social universe of hospice patients, which includes recommendations for how to use new media to assist isolated older people to maintain social relationships.

1) USE EXISTING APPS

Our research found that older people are often very reluctant to use a new app. When trying to assist older people in using online resources it is best, if possible, not to suggest new apps. Find a way of achieving your aims through an app they already regularly use, such as WhatsApp.

2) EMPATHY

Social isolation has been a common experience for older people, especially those who have lost a partner. Isolation is particularly common in the UK. One result of this virus is that people of all ages are now experiencing isolation. They may thereby gain greater empathy with the lived experience of older people living alone or in isolation.

3) POLYMEDIA

Our research shows that today each individual has particular preferences for how they prefer to communicate. For example, a person might be fine with the webcam, but only if you text first so that they are prepared. It is important to learn about an individual’s media preferences and then respect these.

4) FORUMS

The hospice research found that people who are struggling (in that case it was mainly cancer patients) find forums of considerable value. But they divided into two equal groups. One group only wished to exchange such intimate problems when the forum was entirely anonymous; the other was only comfortable communicating with identifiable others. We need to develop and proliferate both kinds of forums.

5) FREQUENCY, NOT CONTENT

For many older people what matters is not what is contained in communication, but its frequency. Knowing that people are interested enough to make some kind of contact is far more important than anything those people actually say.

6) THE FINE LINE BETWEEN CARE AND SURVEILLANCE

This point applies to personal relationships, where older people may appreciate being in constant contact, but care greatly about autonomy and dignity. It also applies to the macro level, as where some people regard China’s response to the virus as unacceptable authoritarianism, and others see it as an entirely justified expression of how a state cares for its citizens.

7) SMART FROM BELOW

Most policy suggestions are implemented by policy experts in a ‘top-down’ manner, thereby affecting the bulk of the population, but the widespread use of digital technologies produce a democratising of creativity and ingenuity. Anthropologists seek to learn from the creative responses of ordinary people, accumulate examples (e.g. https://covidmutualaid.org/) and use these to educate others.

ASSA will soon be publishing a 150-page manual of protocols on how to use WhatsApp for health, created by Marilia Duque, who is a researcher on our team. These are not her own ideas, but best practice examples gathered from 16 months of observing how older people in Brazil used smartphones for health purposes. We need to establish platforms where people can share what they are learning from the creative response of ordinary people.

8) CARE AT A DISTANCE

Digital technologies have made the practice of care at a distance commonplace. This occurs in different ways. For example, working with older people in China and Japan, we found they have shifted to much greater use of visual communication, such as stickers and short videos, as a way of expressing care. These people found it easier to convey affection through these means, rather than through more conservative traditions of face-to-face encounters.

9) WHATSAPP SUPPORT

Today many people form WhatsApp groups with family and friends to support isolated people or patients. This is highly effective. So we need to ensure that everyone is aware of its benefits. Marilia Duque is advocating a system of `WhatsApp Angels’ in Brazil in response to the virus. As it happens, Whatsapp has already created a ‘Coronavirus Information Hub’ which includes examples of how to use the app to stay in touch with loved ones or seek up-to-date health information on the virus. The Information Hub can be accessed here.

10) WEBCAM

In a phone call, older English people traditionally tend to say they are fine, even if they are at death’s door. There are many advantages to connecting via webcam, which allows one to see how a person is actually doing. Many might find it helpful to have their webcam switched on even when people are not actually talking, since this is more akin to co-present living together.

11) NON-TECH-SAVVY ELDERLY PEOPLE

Coronavirus is about to cause a crisis for those elderly people who may never learn to use smartphones, as access is stopped for visitors to care homes. A helpful device is the Amazon Echo Show, since it can conduct webcam conversation through simple voice commands such as ‘Echo, videocall Mary’. Set-up requires another person using an Alexa App and is quite complex but the technology does work.

12) FACEBOOK

Facebook has shifted from a young person’s platform to use more by older people and community groups. At this point, the main advice is for young people to remain on Facebook where they will be able to share more family information, jokes, and other material with those older people.

13) CONFIDENTIALITY IS LESS IMPORTANT

The hospice research mentioned above suggested that, so far from protecting people, an obsession by institutions with privacy and confidentiality has become a major source of harm. People who are ill were more concerned to ensure that relevant people were informed about their condition, rather than that strangers might also know about their condition. Privacy is important, but tight controls over data because of concerns over litigation can cause considerable harm to patients.

14) PATIENCE AND PATIENTS

Older people may want and need to learn about how to use smartphones and similar skills, but they mainly reported that young people do not help teach them. They become irritable and impatient and take the phone away to make changes. With social isolation it will become even more important to help people learn to do things for themselves.

15) KITEMARKING

Googling for health information is now a ubiquitous part of how people respond to illness or the fear of illness. Users, influenced by commercial sites or scare stories, can end up more anxious and misinformed. Kitemarking has improved with the foregrounding of more authoritative sources and is promising to do more. Google have already implemented this, prompting UK-based internet users to consult the WHO and NHS pages when the term ‘covid 19’ is entered into Google. However, Google health enquiries are still often headed by commercial and sponsored sites.

16) A GLOBAL EXPERIMENT

Right now, the world is embarking upon a vast global experiment, by default: a massive shift of education, work and sociality to online. This is an important time for digital anthropology to try to help assess any associated problems that arise from these strategies, as well as any long-term benefits.