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Facilitating nutritional health through the smartphone in rural Japan

LauraHaapio-Kirk7 November 2019

Communal eating in Tosa-cho. Photo by Laura Haapio-Kirk (CC BY).

In September I received the good news that a joint application I made for the newly established Osaka-UCL Partnership Funding was successful. Along with Danny Miller on the UCL side, I teamed up with Dr Yumi Kimura from Osaka University who works on nutrition from a public health perspective in Japan, Myanmar, and the Himalayas. The project also involves Lise Sasaki, who previously studied medical anthropology at UCL. Our proposed collaborative project joins my ongoing anthropological research on smartphone usage among older adults in Japan with Dr Kimura’s public research on nutrition, to develop a mobile health intervention which is sensitive to local usage of mobile phones and attitudes towards health.

The project will take place in my rural fieldsite of Tosa-Cho, a town of roughly 4,000 inhabitants, in Kōchi Prefecture, South West Japan. This rural mountainous area is remote, with the nearest city (Kōchi City) being a 1-hour drive away. Rural towns in Japan are most in need of technological innovation to deal with the growing number of elderly people who are living often alone and in need of care. We know from our ethnographic research that mobile health applications are seldom used by older adults in this town, despite smartphone usage being fairly high. This indicates that there is great potential for digital health interventions but these have to adapt to the way local people are already using their smartphones, rather than encouraging them to download new apps.

Sharing food and conversation. Photo by Lise Sasaki (CC BY).

Over the course of our fieldwork, we have seen this trend across several field sites ranging from Brazil to Ireland: although mHealth initiatives may focus on changing behaviours through the use of native apps built specifically for improving health outcomes, we think making use of the ubiquitous platforms already in common use amongst the target populations could offer significant benefits. We plan to examine the creative ways that older adults are already using common smartphone applications for health and wellbeing, and will explore how these everyday applications could be used for purposes of a nutritional intervention, for example meal tracking using the application Line, or the facilitation of social eating in order to reduce isolation among older adults.

We will present our findings to doctors and health researchers at a symposium in 2020 organised by the UNESCO Chair in Global Health and Education, held at Osaka University by Prof Beverley Yamamoto. We also want to share our findings with the local population of Tosa-cho, so we plan to run a community workshop where we will demonstrate ways for people to use their smartphone to benefit their health and wellbeing. We are hoping that this research and accompanying policy report will reach beyond Kōchi prefecture and will be shared more broadly to advise on digital health policy across Japan. As older adults adopt the smartphone at increasing rates, the potential for mHealth to mitigate some of the health challenges that come with ageing is promising, but initiatives must adapt to already existing behaviours if they are going to have a chance to be sustained.

 

 

“Iconographies for Retirement” – By Pauline Garvey

GeorgianaMurariu31 October 2019

Author: Pauline Garvey

As part of the ASSA project, we are developing mHealth (mobile health) initiatives in order to address the needs of our populations. In our two field sites in Dublin we are engaged in developing social prescribing sites that can be accessed online, on smartphones, and as hard copies for those who are not comfortable with digital media.


Figure 1: One Dublin-based social prescribing site that we are developing.

Social prescribing is based on the recognition that a person’s health is improved by the degree she or he is embedded in social networks and cultural activities (see my blog December 2018). In many cases it involves a GP or counsellor writing a ‘prescription’ for a patient to attend a social activity that will embed a person in their community and enhance their health in mental, emotional and physical ways. In one pilot study, the Irish Health Service Executive described social prescribing as a service that:

“…helps to link you with sources of support and social activities within your community. Social Prescribing is for you if you feel that you need some support to mind your health and wellbeing, you feel isolated, stressed, anxious or depressed, you simply feel you need the service.”

This approach to health has been subject to quite a bit of media attention in Ireland this year and has been subject to several pilot studies nationally and internationally.[i] As part of this rising tide, there is now an annual international conference dedicated to social prescribing which is being developed in diverse countries from UK to the United States, Canada, the Netherlands, Singapore, and Finland.

The question for our team is firstly how can we develop a social prescribing site that enhances the lives of our research respondents? Secondly, how can an anthropological approach make a positive contribution to social prescribing more generally? Our approach is very much coloured by our methodology of anthropological ethnography and participant observation. This means that our insights emerge as the result of immersive participation in our field sites, building on the 16-month ethnographic fieldwork already completed. In developing a social prescribing website, we plan on continuing to work with our research respondents to understand how they use and engage with initiatives such as these.

The first issue emerged early when our informants expressed doubt about the iconography used to denote retirement.

Figure 2: One of the icons that our respondents objected to

For the people we work with, this icon seemed to capture an ageist expectation of what retirement should be rather than their actual experience of it. For example, one of my respondents jogged the 30 km home on the day he retired. Although this man’s level of fitness is not what I would describe as ‘average’, his perspective on remaining active is more in keeping with our respondents than the icon above (see figure 2).

As a result, we set about working with students from computer science in Maynooth University to create something more appropriate. As we work on developing iconography that better encapsulates the experience of our respondents, we realise that this is an ongoing iterative process that we will constantly revise as we launch our websites and work with our respondents in the years to come (see figure 1). Two alternative icons we are currently considering with respondents can be seen below.

 

Figure 3: Alternative retirement icons that we are currently considering with our research respondents.

 

References:

[i] https://www.irishtimes.com/life-and-style/health-family/what-is-social-prescribing-and-how-it-can-benefit-your-health-1.3840354

 

Ageing, Retirement and Activities in Yaoundé – by Patrick Awondo

ShireenWalton29 August 2019

During my 16 months of ethnographic work in Yaoundé, I have been investigating the process of ageing in the digital era. As part of the research, I spent time with middle-aged people, but also retired older persons in order to try and obtain a clear understanding of their daily lives and routines The interviews, therefore, always included exploration of informants’ activities.

The daily activities of my research participants can be divided into 3 categories. There are those related to professional work for people still in service or who are forced to continue producing either to survive or to help their families. Then there are the activities that could be described as routine for retirees for those who no longer work and enjoy a retirement pension. These activities vary between associative and community involvement, commitment to civic life, sport and religious engagements. Finally, there are activities related to the displacement of living spaces that retirement imposes. In this sense, the “return to the village” is a major fact although complex to grasp. In Yaoundé, there is indeed a real tension between the ideal to return to the village, the materiality of life in these often rural areas with their deficiency in basic infrastructures and the relative comfort to which survey participants are accustomed. This makes this ideal an ambivalent reality.

Overall, informants are concerned about the occupation of their time in a practical perspective fulfilling several functions: first, a routine function capable of filling up days that can be long and boring, especially if they live alone or without immediate family present or nearby. These routine activities are thus varied and embrace the playful dimensions of life, for example watching television. It can also include participation in community life, religious and various activities. In this same fun life, the uses of the smartphone and other similar devices like the laptop should be considered. There is no clear break between these internet-related activities, for example watching and sharing videos and those related to television. Then, there are the “productive” activities, which the participants in the study consider as generating some benefits for themselves and for their close relatives.

A 64-year-old retired woman, a former primary school teacher organises an informal crèche in her home to “help neighbours who have young children who do not know what to do”. These children from the neighborhood are grouped with her grandchildren (3 in total), which her 3 sons and 3 daughters entrust her regularly when they are busy. It is an activity underlines the informant, « that allows to extend her work but also to help her family because the nurseries for children are expensive in Yaoundé when one is lucky to find one near home. “; this dimension of dual utility is fundamental for this informant as for other people met. Admittedly, the mobility and health variable and the financial capacity to sustainably extend activities such as this informant are needed.

Finally, there are a range of activities related to physical and mental health, and to the maintenance or construction of a social and community network. Staying active to stay healthy is the watchword for study participants, especially among public sector retirees and former formal sector workers. In this area, walking, sport, outings and meetings within sports groups that extend to associative activities (tontines), volunteering, and strong community participation are central. However, it is necessary to take into account the complexity of the life trajectories of individuals, and to keep in mind that there is not always a clear cutoff between being retired and the cessation of activities. Just as the retirement activities are not to be considered as exclusively new or in complete disruption to the professional life of the participants in the study.

Applying ethnography to digital health aims; challenges and opportunities – by Charlotte Hawkins

LauraHaapio-Kirk10 August 2019

Author: Charlotte Hawkins

Photo (CC BY) Charlotte Hawkins

How can a holistic ethnographic understanding of ageing experiences, particularly related to health mobile phone engagement, contribute to an mHealth initiative and improve the accessibility of health services and information through mobile phones? This applied challenge in the ASSA project has initiated partnerships with digital health practitioners in most of our fieldsites – in particular, with collaborators working within existing phone practices. This aligned with our early finding across the fieldsites, that mobile phones are commonly used for health purposes, but through communication on apps evidently most popularly used, such as calls, Facebook and WhatsApp. In Kampala, I worked with The Medical Concierge Group (TMCG), a medical call centre founded by Ugandan medics to improve the accessibility, affordability and quality of healthcare. They offer a 24-hour toll-free phone line, SMS, WhatsApp and Facebook access to a team of doctors and pharmacists and have 50,000 interactions each month. At the time of fieldwork, they were in the process of researching the development a psychiatric call line, or ‘telepsychiatry’. This early stage of service development meant that TMCG were interested in and able to accommodate holistic ethnographic insight in their considerations.

Ethnographic insights included systematic information on 50 low income research participants’ existing mobile phone and mobile health practices as relevant to accessing TMCG services. For example, access to airtime and data is intermittent, with a tendency towards regular low-cost subscriptions. This suggests that calling or using the internet could be inaccessible to users at least once a day. Furthermore, 54% of participants had made health-related calls in the last month, and 27% of their previous three remittances were for health purposes, which confirmed an existing propensity to use mobile phones to support family health – but only across their own network of friends and relatives. Interviews with 50 respondents encountered during the wider ethnography also offered TMCG feedback on mental health perceptions, experiences and help-seeking preferences. These interviews were predominantly with older people, mostly older women, who would not typically opt to engage with research on mental health, and yet who represent an advisory position within their family or community. This also included interviews with health workers, including psychiatric clinicians at the local government hospital, and private health clinicians within the fieldsite. Research showed that treatment for mental illness was perceived to be unavailable, costly, or stigmatised. Often respondents said they prefer to handle mental health problems through prayer or counselling within their community, with hospital treatment sought only once problems become severe. This suggested that optional, confidential, accessible or community-based mental health services could be useful for low-income people in Kampala, if advertised accordingly.

Initially, the wide-reaching interview responses were considered thematically, from causality to treatment seeking, and condensed into representative quotes for presentation back to the team. More recently, alongside the team, these themes have been expanded to inform a draft publication in psychiatric journals, which TMCG hope to use seek further funding. We also hope to further disseminate findings in accessible formats amongst other digital and mental health service providers in Kampala. As familiar to many applied medical anthropologists, translating interpretive, subjective and relativist ethnographic information within positivist, objective and universalist medical paradigms brings challenges, such as risking that complex human experiences and perceptions are reduced into ‘practical’ or digestible concepts (Kleinman, 1982; Scheper-Hughes, 1990). However, this assumes that the health practitioners and their discipline are not open to understanding their patient’s everyday realities, which has not been the case in this instance, perhaps reflecting a particular affinity between anthropology of digital health – appropriation of phone based health services is entirely dependent on their relevance and usefulness for their target populations.

The on-going collaborative process has also highlighted what anthropology might learn from the research and writing processes of health disciplines, for example: ensuring findings are widely disseminated and thus accessibly written; avoiding anecdotal, emotive or biased claims; and ensuring that quantitative statements, “many people said xxx”, are qualified and backed-up. The collaboration has  also confirmed that the flexibility of anthropological research and richness of qualitative insight potentially has much to offer health programmes, to ensure their contextual relevance. In ethnographic research, we have the privilege of time, which comes with in-depth insight, and familiarity with the community – time and understanding which we can offer usefully to other audiences. The data provided can perhaps confirm a hunch of a practitioner from the area but can also surprise them. When documented and publicised, the data encourages practitioners to both tailor their approach, but also allows them to share the specific requirements of their target population, encouraging others to do the same – or hopefully even to offer funding to support them.

 

REFERENCES

Scheper-Hughes, N. Three Propositions for a Critically Applied Medical Anthropology. (1990) Social Science & Medicine 30 (2): 189-97.

Kleinman A. The teaching of clinically applied medical anthropology on a psychiatric consultation-laison service. In Clinically Applied Anthropo1ogy: Anthropologists in Health Science Settings (Edited by Crisman N. and Maretzki T.) Reidel. Dordrecht, 1982.

 

Health and Ethics – by Pauline Garvey

LauraHaapio-Kirk1 August 2019

Author: Pauline Garvey

The current advertising slogan for Gaelic Sports Clubs is ‘Where We All Belong’. The girl is shown holding a hurl for the sport called camogie. Gaelic sports including camogie for women and hurling for men have a huge national following, all-Ireland finals easily fill the national stadium with 80,000 spectators.

 

Why is it important to be active, or is it important to be active in specific ways? In recent years there has been mounting focus on health and wellbeing, as evident in the launch of the ‘Healthy Ireland Framework’ (2013-2025) a Government-led initiative that aims to enhance the population’s health. In this initiative health is presented as a public good, of individual and social concern. In the face of troubling temptations that arise with modern lifestyles the launch of this framework explicitly carries an ethical imperative: individual health, it asserts, affects the quality of everybody’s life experience. It is for the collective good to maintain one’s health. The approach recommends that the way to enhance wellbeing is less by focussing on the negative and more by highlighting what one can do to stay well. It recommends, in other words, a focus on the positive instead of the retribution of a poor quality of life that comes with bad behaviour.[i]

Often such initiatives focus on activities. From my fieldwork with middle-class Dubliners I have learned that staying well and being healthy is often talked about as routinised and collective in nature. People gather to walk, run or do yoga and the group aspect is an essential ingredient in the diverse efforts to stay healthy. When people talk of ‘activities’ they are often referring to group activities rather than solitary ones. Lots of keep-fit activities like walking or running can be done alone, yet they seem to be more successful when done with others. Respondents who attend tai chi classes might attend with a friend, and even if they don’t join these groups to extend their social networks they seem to prefer them to following a YouTube course online. This is interesting because it implies there is an added feel-good factor to the demonstration of healthy living beyond the benefits that come with social interaction. It is not just about being healthy, I suggest, but pursuing health in the company of others carries an added benefit in a cultural context where consensus is highly valued.

Younger respondents who have children report emphasis on mindfulness in schools where the health and wellbeing of children and young adults is couched as a social and spiritual category as much as a physical one. The National Council for Curriculum for example states that in ‘health promotion, health is about more than physical health and wellbeing. It is also concerned with social, emotional and spiritual health and wellbeing.’[ii] What we are seeing therefore is an interesting blurring of health, ethics and even spirituality to the degree that it is difficult to discern their distinctions.

 

References:

[i] A Framework For Improved Health and Wellbeing 2013 – 2025, available online https://assets.gov.ie/7555/62842eef4b13413494b13340fff9077d.pdf)

[ii] The National Council for Curriculum and Assessment. https://curriculumonline.ie/getmedia/007175e5-7bb7-44c0-86cb-ba7cd54be53a/SCSEC_SPHE_Framework_English.pdf

Neurochemical selves or social prescription? by Pauline Garvey

XinyuanWang15 December 2018

Social Prescribing Brochure available at https://www.hse.ie/eng/health/hl/selfmanagement/donegal/programmes-services/social-prescribing/social-prescribing-brochure.pdf

In an academic article in the early 2000s sociologist Nikolas Rose asks ‘How did we become neurochemical selves? How did we come to think about our sadness as a condition called “depression” caused by a chemical imbalance in the brain and amenable to treatment by drugs that would “rebalance” these chemicals?’[i]. During the decade from 1990-2000 Rose charts high rates of prescribing psychiatric drugs in Europe, Japan and the United States. In Europe growth in the value of prescription drugs rose by over 125% while growth in sales of similar drugs in the United States rose by over 600%. He notes that a decline in prescriptions for hypnotics and anxiolytics was matched by a rise in prescriptions for anti-depressants of about 200% (2003: 46).

There is, however, another trend that is gathering momentum on the international stage and which couldn’t be more different than the trends that Rose documents.  Social prescription takes an altogether different approach to health and embeds it in social networks and cultural activities. It is defined by the NHS as ‘helping patients to improve their health, wellbeing and social welfare by connecting them to community services which might be run by the council or a local charity[ii]. In Ireland the Health Service Executive webpage speaks directly to the reader and defines it as a free service that ‘helps to link you with sources of support and social activities within your community. These include Physical activity, Reading groups/books for health, Self-help programmes such as the Stress Control Programme, Men’s Sheds, Community gardening, Arts and creativity’. Social Prescribing is for you if you feel that you need some support to mind your health and wellbeing, you feel isolated, stressed, anxious or depressed, you simply feel you need the service[iii]

In a comparable project called Local Asset Mapping Project (LAMP) run through St James’s Hospital in Dublin their webpage again addresses the reader directly and conjures the scenario: ‘Imagine visiting your doctor and as well as getting a prescription for a pill, you get an electronic  prescription designed especially for you, with a list of all the local businesses and services around you that might improve your health – that is the vision of LAMP’[iv]. The LAMP project points out that wellbeing is determined by ‘good health behaviours’ such as exercise, nutrition, minimal alcohol consumption and good social networks, but notes that traditional medical consultation does not address this adequately’.   As if to echo these arguments, just two weeks ago the Irish Longitudinal Study on Ageing at Trinity College Dublin (TILDA) presented their most recent findings regarding ‘Change in life circumstances’ for Ireland’s over 50s between 2009 and 2016. They found that quality of life peaks at 68, and therefore shouldn’t be thought of in a linear way (ie as a steady decline) but also that fundamental to quality of life is social connnectedness. Quality of life improves with age for the majority of their sample, but only if social engagement is strong. [v]

As an anthropologist the holistic approach to health and wellbeing makes perfect sense. My respondents do not organise their lives ‘in silos’ (see LAMP), and how one feels ripples into all aspects of life, in the same way that everyday experiences are integral to how people think about their wellbeing, happiness – and age. Some respondents occasionally talk in neurochemical terms -particularly when wondering how to get a good night’s sleep, but the majority of their time and energy is devoted to their busy lives.  One of my informants aged in her early 80s resisted joining Active Ageing groups because she did not consider herself elderly. Another woman said ‘I’m 78 but I feel 60, I feel younger, not older’. In the course of my research I have met some retired men and women who are lonely, isolated or bored but many others take to retirement with vigour and enthusiasm. What interests me is whether these activities such as knitting, writing or meeting friends for coffee are reflected upon as ‘good health behaviours’. What are the social trends that social prescription is tapping into, or indeed leading?  Meanwhile as I conduct me research the benefits of social embeddedness seem clear. As one man told me since retiring from work he has never been so busy.

[i] Rose, N. (2003) ‘Neurochemical Selves’ Society 41 (1): 46–59.

[ii] https://www.england.nhs.uk/contact-us/privacy-notice/how-we-use-your-information/public-and-partners/social-prescribing/

[iii] https://www.hse.ie/eng/health/hl/selfmanagement/donegal/programmes-services/social-prescribing/

[iv] http://www.ehealthireland.ie/Case%20Studies/Local-Asset-Mapping-Project-at-St-James-Hospital/

[v] https://tilda.tcd.ie/news-events/2018/1812-w4-key-findings/

The Purple Month

Alfonso ManuelOtaegui10 October 2018

As a member of the Anthropology of Smartphones and Smart Ageing research project, I am doing fieldwork among migrants working in Santiago de Chile. Among the many diverse migrants who live in this city, I chose to work with Peruvian migrants. Peruvians are the largest immigrant group in Chile: they represent 25.2% of the migrant population, according to the 2017 census. Many of them have been living in this country for over fifteen or more years, and most of them live in Santiago (65.2% of migrants live in the Metropolitan Region).

During the first weeks of my fieldwork, I asked a Peruvian colleague –who was also living far away from his country– on advice about meeting his countrymen here in Chile. He advised me to approach Christian confraternities. Confraternities –in this case Peruvian– are groups of people who honor their local Catholic devotions. I started then to frequent a catholic church in the center of the city, which is famous for being welcoming and supportive of migrants. There I met Peruvians belonging to several different confraternities. Some of these confraternities honor Peruvian Marian devotions, such as the Virgin of Chapi, from the southern city of Arequipa, or the Virgin of La Puerta, from the northern city of Otuzco. Others honor Peruvian saints such as San Martin de Porres or Santa Rosa de Lima. All of them were as proud of their devotions as welcoming to my ethnography.

Among all of the confraternities, I decided to join the most diverse in terms of regional origin, including even non-Peruvians: the Hermandad del Señor de los Milagros (Confraternity of the Bearers of The Lord of Miracles). This devotion originates in Lima in the seventeenth century and, although the largest confraternity can be found in the capital city of Peru, there are local confraternities –such as the one I joined in Santiago– all over the world, from São Paulo to New York (even in Hamamatsu, Japan). “Wherever there is a Peruvian there is the Lord of Miracles”, so I’ve heard them quote of Monseñor Hidalgo, the spiritual guide of the main confraternity at the Nazarenas church in Lima.

The brothers and sisters have been very kind to me and have allowed me to join them in several activities along the year, such as regular meetings, spiritual retreats and ‘polladas’ (traditional funding events where chicken dishes are sold). The biggest event of the year is the Lord of Miracle’s procession at the end of October, called the purple month, due to the typical color that identifies this devotion as seen at a number of activities (shorter processions, masses, retreats, etc). The main procession, lasting eight hours, takes place on the last Sunday of October. As a sign of the place of Peruvians in Chile, the procession goes from the Cathedral of Santiago to the migrants’ church, gathering thousands of devotees. I was invited to join one of the groups of thirty people carrying the 1.5 tons image. ‘Carrying’ is not only a body technique one needs to master (the hands at a certain position, the steps following the music) but also an honor. Besides, ‘carrying’ is a complex concept whose meaning linked to faith and community I am just starting to grasp.

 

 

 

 

 

 

 

 

Most of the miracles I have been told about are in fact related to health: a surgery that went well, a disease that was beaten against all odds, a tumor that turned out to be benign. As far as I can understand, prayers and processions do not substitute medical procedures. I see in the chains of prayers, the dedication of a procession stages, and the participation in funding activities a sense of community, a display of collective care. What is interesting for our study in the ASSA project, is that this particular devotion is not only an expression of belonging, of tradition continued abroad, but it also opens the door to the study of the relation between faith and health.

References

Institituo Nacional de Estadísticas Chile. 2018. Síntesis resultados Censo 2017. Santiago: Instituto Nacional de Estadísticas Junio / 2018.

 

 

 

Dr. Google will see you….anytime.

DanielMiller4 October 2018

Given that I suspect almost everyone you know at least occasionally uses google to look up health related information, at least sometimes, there is not a great deal of research on the consequences – though I have no access to google’s own research. This has therefore been a major focus of my work on digital technologies and health here in Ireland. What are the main conclusions so far?

Most noticeable is the way googling exacerbates differences in class and educational background. There is a pronounced spectrum. At one end are those, often without medical backgrounds, who would comfortably use google to track down the latest medical journals, because they are trained in research. At the other end are those who simply look at the items that come at the top of their google search, which are often scare stories, rumours or commercial sites. As one pharmacist noted `They just type it into google and probably read the first couple of articles that come up. So whatever’s most recent. They don’t differentiate NHS from random.’ This can be very frustrating to medical practitioners when it leads to their patients locating the problem in the latest online speculation, rather than starting with the practitioner’s own analysis.

This spectrum is complex because of several contradictory factors. A surprising number of people in this town mention that there is someone with medical training, within their extended family, who may mediate their searches. There is also a well educated section who use googling as a kind of anti-medical-establishment resource seeking out alternative and complementary treatments, which they feel deal with issues and consequences that are neglected by bio-medical establishments.

At both ends of the spectrum most people see equally strong positive and negative consequences of googling. They feel more knowledgeable, and in control of their treatment, but they also see googling as a cause of considerable stress and anxiety. They note that pretty much any symptom could potentially indicate cancer or some other life threatening condition. Some therefore limit their googling. Many people are wary of informing doctors of their searches for fear they will be seen as a nuisance or a challenge to the doctor’s authority. Googling may be a factor in deciding whether to see a doctor, but it also employed subsequent to visits to the doctor in order to better understand terminology, medicines and procedures. Pharmacists may actively guide people in their googling. Those who differentiate trusted sources of information mostly choose the US Mayo clinic or the UK NHS site rather than any Irish sites, and also favour specialist sites dedicated to their particular conditions. Unlike early evidence from other fieldsites in our project, such as in our recent blog post about Cameroon, there is little use of YouTube here for health information.

To conclude, google appears to provide equal information to all, but in practice, it may extend class and educational differences and create problems of online health literacy. Well-educated people become still better informed, while poorly educated people are left even more confused and anxious. The obvious solution is kite-marking those sites backed by established professional bodies. This does nothing to prevent a preference for complementary health sources, but does ensure a more equal playing field for those who, to use a common expression here, think of online as Dr. Google.

The dilemma of life-saving medicines in China

XinyuanWang20 September 2018

Author: Xinyuan Wang

Last summer, a film about illness and medicine achieved phenomenal success among Chinese audiences. Some friends of mine who had watched the film suggested that I take some tissues or even towels along to the cinema, assuming, , half-jokingly, that many would cry during the film. But they were quite right, in the cinema there were people sitting all around me wiping tears during the film, and talking highly of it with tears in their eyes after the cinema was over.

The film, Dying to Survive,  tells the tale of a health supplements peddler Yong who smuggles illegal medicine from India to sell to leukaemia patients in China at more affordable prices. Why are Chinese people all so touched by a film about an illegal medicine smuggler?

In the film, even though the protagonist Yong initially goes into the trade by chance and was purely motivated by making money – “I don’t want to become a saver, I just want to make money” as he claimed, Yong started to become more altruistic as he gradually realizes how many lives he could save by the cheaper medicine. The film was inspired by a real-life incident in China: in 2015, a man called Lu Yong was charged for importing and selling a cheaper, knockoff version of Gleevec, a leukaemia medication. Lu himself suffered from leukaemia and began purchasing Gleevec tablets produced by an Indian pharmaceutical company for other patients who couldn’t afford the “real” drug. The indictment was later quashed after the patients that had benefited from Lu’s actions petitioned the court to lessen the sentence and release him. In recent years, the Chinese government had realized this problem and had make some effort to reduce the price of ‘life-saving’ medicines. So, the film is also in line with the state policy.

As shown in the film, an old lady said: “one bottle of genuine medicine cost me 40,000 CNY (around 4,500 pound), I have been sick for 3 years, and I have been eating these pills for 3 years. In order to buy this medicine, my family had to sell the house, my family has been totally dragged down. Which family does not have a patient? Can you guarantee that you will not get sick for a lifetime? I don’t want to die, I want to live.”

A 45-year-old woman whose mum died two years ago because of cancer, told me: “I just can’t stop crying, when the old lady in the film said ‘Can you guarantee that you will not get sick for a lifetime? I don’t want to die, I want to live’,” she adds, “everybody who has experienced a major illness themselves, or of their family member or good friends can feel for the film. You would never imagine the desperate feelings about losing somebody you love dearly just because you can’t afford the saving-life medicine.”  Indeed, even though there is life-saving medicine, there is no life-saving money. In the film, the only sincere line a deceitful drug dealer uttered was “there is one illness in the world which you can never cure – poverty.”

Satirical films such as this unveil and spotlight the social concern that no Chinese would not bear to ignore – that for normal people, a major disease can potentially tear a family down both mentally and financially. Dying to survive has sparked and leveraged tremendous discussion over many topics nationwide, which is unprecedentedly in China’s film history. Without a doubt, the film has touched a few sour points of Chinese medical care from the high price of imported medicine to major illness insurance policy (da bing yi bao). Each aspect requires thorough investigation in order to understand the situation.  If you are interested in the film, here is the trailer with English subtitles. https://www.youtube.com/watch?v=on82VId28l4

The Internet of Health in Yaoundé – by Patrick Awondo

ShireenWalton12 September 2018

Author: Patrick Awondo

Over the last decade, Internet penetration rate in Cameroon has more than doubled, from around 10% in 2007 to 21-30% in 2017 (these figures leave aside small and medium-sized cities, and do not take into account connection-sharing practices that are part of people’s daily habits). The internet boom, made possible by the democratization of smartphones (which 80% of the population now have) has impacted significantly upon behavioural habits and the ways in which individuals and groups live at different stages of their lives. Among the areas chiefly affected by such changes, health is attracting attention in the digital landscape because it is the subject of unprecedented publicity, and is considered to offer many affordances to people.

In Yaoundé as in other African capitals, health remains a significant problem, but also, is undergoing  ongoing processes of change, and permanent questioning. In the smartphone age, health is an area of intense social activity. Three types of issues in the online health context deserve attention for the importance of the activities they generate:

  1. The variety of access to online health resources
  2. The diversity of information and forms of access offered by the Internet
  3. Challenges related to the density of supply, and what our colleague, Daniel Miller, perceives as inequality in interpretation, and the ability to appreciate in a fair and balanced way, the different “resources” of health online.

The variety of access to health resources

Generally speaking, people in Yaoundé use the Internet in contexts of/for health either to publicize health resources, that is to say, to present information that aims to simultaneously improve access to health through good practices. Or, to find the right information about very specific health problems. The latter is undertaken through a range of sites and links dedicated to specific health issues. Specific health issues can include pandemics such as malaria, tuberculosis or HIV / AIDS, which are priority public health problems usually treated by public health actors. However, people also turn to the Internet to search for diseases that have no visible presence in public health discourses, and which generally lack in public awareness – such as Typhoid fever, as well as certain female health issues such as ovarian cysts, dermatological problems, and infertility. These issues are addressed in forums, and blogs, but more and more, via dedicated Whatsapp groups that are often created by individuals with such concerns. There are also many health bloggers from Cameroon and the Cameroonian diasporas. Some are not always of Cameroonian descent or nationality, but blog membership appears most strong when individuals are Cameroonians or presented as originating from the country.

Overall, there are different ways of accessing the  internet of health in Yaoundé. Informants could be classified into 3 categories:

  1. those who watch YouTube for health
  2. those who Google-search health problems
  3. those who follow specialized health blogs

Health-searching practices on YouTube

Amongst my young informants, (19-31 years), the practice of searching for information on YouTube seems to be fairly common. Informants describe a typical double scenario, whereby they have a health concern, for various reasons that may be related to a lack of economic means, or the inability to join a health service. In this case, they will introduce on YouTube the name of one or more symptoms, which they hope a video will help inform them about. A 31-year-old security officer at a mobile phone operator explained how she regularly used YouTube on her smartphone to get video responses mainly about intimate grooming techniques, and a set of problems related to gynaecology. Interested in plant medicine, she regularly follows a “youtubeuse” specialized in herbal care for women. Many under-educated people like this female informant with limited income, but also among people with higher levels of education follow the youtubeurs of Cameroon almost daily. Other informants in the same social category stress that seeing a specialised doctor can be difficult in Yaoundé because of the high rates that these specialists practice. About 10,000 XAF consultation is already 10% of the salary of a security guard as our informant.

These high prices are not those charged in public hospitals, where a specialist costs half the price in private. Another factor determining the choice of Youtubeurs health advice is to be found in the strong competition that plant medicine imposes on modern Western medicine in Yaoundé. This appeal of alternative, natural therapies can be found amongst all social strata.

Those who “Google read” health on the Internet

During interviews and observations in one Yaoundean clinic, it appeared that searches on Google densified as a large part of the population access the Internet via the smartphone (specifically, the android phone, which is most popular here). Healthcare professionals in this capital’s leading private clinics point to the fact that a growing number of patients in consultation rooms are talking about diagnostic elements previously sought on the Internet, or afterwards in order to be able to make analogies by comparison.

The issue of individuals making their own comparisons with official health advice is intriguing. In another clinic, a 40-year-old teacher explained his reliance on seeking health information on Google through the dual need to better understand the disease from which his son had suffered from for 6 months at the time of the interview, but also, to compare the information received during diagnosis with that available on the Internet. If the case of this Father is not isolated, it reveals the complexity of different persons and needs that are engaged in via the search for health information on Google.

So while some informants point out curiosity and the primary need for knowledge of the disease or to understand the symptoms, this informant took to researching online for secondary purposes, to in some sense validate the official medical diagnosis. Another 44-year-old informant, a married, bookstore employee and Mother of two who lives in mvog-Ada, stressed the fact that the availability of the internet is a key factor in explaining its popularity and usage. Suffering from a Glaucoma, she went to an Ophthalmologist in a public hospital. The latter professional indicated that surgery was inevitable. Frightened and seeking reassurance, she turned to Google from her office to access information about her own illness. For this informant and for the first mentioned above, the search for information becomes a way to access a second opinion on the diagnosis of the doctor, especially in the case of serious diseases.

Health blogs and their followers

At the beginning of August, I was walking in the streets of Mvog-ada, the low-income neighborhood, when I was accosted by a group of people ;  two young men, a man, and a young woman, all wearing a green T-shirt on which read the name of a company that distributes herbal medicines. The group explained to me how they had created an online site with an active blog through which to communicate and sell their products. Like this distribution company, many groups have online blogs that are subscribed to by many Cameroonians. As a rule, these Blogs are put online from Cameroon and in particular the two big cities that are Yaoundé and Douala. But some of the blogs are often domiciled in Europe, particularly in France.

Such blogs cover broad health issues ranging from exclusively female problems (such as intimate care practices, ovarian problems, and so forth) to major pandemics (Malaria, Typhoid Fever, Cholera). There is also a very large number of sites dedicated to plant medicine. These plant medicine sites, still called herbalists, are very successful in the online contexts.

In sum, health on the Internet seems to play a major role in Cameroon, affecting the way people access health information on the one hand, and the way in which this – and also non-Internet accessed medical information such as doctors’ diagnoses – is evaluated. These last observations highlight two types of concerns: on the one hand, the difference between specialized and non-specialized information (also professional and non-professional); on the other hand, the issue of inequalities, linked to the ability of informants to analyze ‘good’ and ‘bad’ news offers. This brings us back to the classic issue of the reproduction of (health) inequalities related to economic context and education levels, and how these factors influence the use or non-use of information and the evaluation of their quality and/of efficacies.