Review on ethnographies done on e-health/m-health/telemedicine

By Maren Jeleff

Over the last decade, telemedical devices have been increasingly implemented in the health care sector. Communication and information technologies support diagnosis, treatment, health education and monitoring which makes the communication between doctor and patient independent of time and space (Oudshoorn 2008, Mort el al. 2003). The assumption behind introducing more technology into the health arena is that it will reduce costs in health care, largely by enabling patients to care for themselves. However, as Ruckenstein (2015) cogently argues “(…) as long as we do not understand how health technologies participate in, and contribute to, care encounters contextually, the outcomes are difficult, if not impossible, to assess, measure, and scale” (2015:32).

In this paper I use e-health as an umbrella term, with telemedicine and m-health as components of e-health. While telemedicine often encompasses audio and video interaction between stakeholders, m-health is used when referring to health practices delivered via mobile devices, including the usage of messaging services, mobile applications, GPS and Bluetooth (WHO 2011:6).

I initially started this review by searching for anthropological studies on e-health in German-speaking countries, but only came up with few such studies. After an interview with a professor of informatics who developed a game for children who had stem cell transplantation in Vienna, I looked into the possibility of collaborating with the researcher and exploring how the children, their parents and doctors received this game. His response was disappointing and a commentary on the field, “Sorry there is no money for such research in Austria”. I researched and found his statement to be accurate.

The objective of this paper is to provide a brief overview of ethnographies conducted on e-health/m-health and telemedicine in Europe in the fields of anthropology and science and technology studies (STS).

 

Telemedicine and telemonitoring

Ethnographies have documented shifts in tasks and responsibilities resulting from the use of health technology that involve telemonitoring. Oudshoorn (2008) examines the works patients, home-care nurses and physicians have to perform when employing an ambulatory electrocardiogram (ECG) recorder, a telemonitoring device designed to detect heart beat irregularities. The author describes users of the device as diagnostic agents. Patients wear the device and capture an ECG when serious irregularities of their heartbeat occur. This device requires patients to take over tasks that were formerly performed by doctors, and to learn from experience when to monitor and what data to pass on to physicians. The study also highlights the invisible work performed by physicians and nurses, helping patients learn to not only monitor as a technical act, but to deal with the affective dimension of the process of monitoring which entails overcoming fear.

Milligan’s et al. (2011) four-year research, undertaken in four countries – England, Spain, the Netherlands and Norway – deals with older people’s experiences with telecare and how technological inventions change the landscape of care. The authors stress the need to involve “older people from the outset in discussions around the forms of care systems that should be developed” (Milligan et al. 2011:351). The findings reflect the need to engage in the desires, experiences and the abilities of those who use the devices, illustrated by the example of a woman with dementia who forgot to activate the pendent alarm when she needed help. Likewise other impairments such as loss of sight, hearing loss – frequent health challenges for elderly people – should be taken into consideration.

Telecare devices often change the landscape of responsibilities, e.g. nurses take over work of doctors, teleoperators take decisions on whether to send help in case of automated calls and technical staff make up their own mind whether technologies should be installed or not. Mort et al. (2003) also illustrate this shift and show the complexity of making telemedicine work by exploring a teledermatological clinic that was temporarily installed to reduce waiting times for dermatological consultations at a hospital in the UK.

Dermatology nurses play a significant role in the process of delivering telemedicine. They take pictures of patients’ skin, draw blood when necessary, gather a medical history, give advice, and reassure patients. Physicians diagnose on the basis of this information. Nurses make decisions based on a set of guidelines, but often think outside the box when collecting information that might prove relevant to differential diagnosis. “Their role moved from information gatherers to knowledge producers, from delegates to mediators” (Mort el al. 2003:289).

Roberts et al. (2012) explore telecare by focusing on the work of teleoperators as they network and build social relations over the phone. They serve as mediators between stakeholders – the person cared for, the caregiver and emergency services – and they make important decisions when serious situations occur. They observe that the remote system supporting people living alone works most effectively when the person cared for has a strong social support network, a point made by others as well (Milligan et al. 2011). Teleoperators also report on the human responses triggered by the downside of health technologies, e.g. patients getting annoyed by frequent false alarms and not always being in the mood to talk to a teleoperator (or on the opposite call excessively).

Pols et al. (2009) point to the shortage of literature exploring “social and affective relations people develop with, and through, medical or health care technologies“ (2009:161). The authors assess the relationship between users and robot pets (a robot dog and a robot cat designed to perform specific tasks) and a monitoring device called “health buddy” for patients with chronic diseases. Other than the way technology was intended to be used by developers, users employed the devices in concert with values that they attributed to them like companionship, friendship, fun and safety.

Ruckenstein (2015) explors a self-tracking app used by healthcare professionals in Finland to monitor patients’ eating practices. Her article illustrates how techno-anthropology, a new move within STS, can contribute to the field of medical technology. The food tracking app functions as a visual food diary – patients photograph what they eat and share it with their doctors. This enables health professionals to become more involved in patients’ day to day lives and get a better idea of what their food intake looks like at different times of the day and during different emotional states. Through this visual documentation the “clinical gaze” is expanded to the private space. This enables health professionals to engage in patient-side communication through visualization and narration about both positive and negative health behaviour and illness management. The focus shifts the role of the practitioner from merely diagnosing diseases in the clinic to promoting health in the home, tailoring diet, and discussing the feasibility of advice offered.

Staroste (2012) approaches the topic of e-health from an “offline” perspective. In her diploma thesis, she documents the lives of five women in Austria living with diabetes type1 who meet regularly without using the Internet as a communication platform. Even though diabetes is part of their life, the reasons for their get-together are company and joy. They pointed out that their circle of acquaintances had a strong understanding of their individual and specific situations, which helped them more than chatting with anonymous people on the Internet. Internet forums were also associated with an abundance of information on the disease that they did not want to digest.

 

E-health and empowerment

Westermarck (2015) analyses an anonymous online peer support forum for people who want to quit using drugs, developed and moderated by Finnish past and present drug users. The forum provides an ungoverned virtual meeting site for quitters, users and non-users accessible around the clock. The forum gives information and support for those wishing to quit drugs and serves as a virtual meeting place where other concerns may be discussed among members who feel a sense of group belonging. Anonymity provides participants a sense of freedom to explore and exchange experiences without fear of stigma, discrimination or social exclusion.

Fox et al. (2005) explore an online forum for users of the weight-loss drug Xenical. The forum provides a safe space for people taking or interested in the drug to discuss their experiences and respond to queries posed by others interested in losing weight by doing so. Discussions often entailed experiences of drug intake, side effects and ways to avoid them, weight-loss achievements, exercise advice and so on. The flow of discussions and the information exchanged are much broader and based more on embodied experience than information typically exchanged in medical treatment contexts. Participants in the forum offering advice are seen as expert patients knowing about the risks and advantages of taking Xenical to gain control of the body through the use of medicine and to obtain a new desirable normal at the cost of accepting a broader range of what normal means to different people.

While X-Online was successful in sharing information and providing support that participants find extremely valuable, and enabled them to become ‘expert patients’, it may fail to facilitate a fully democratised approach to body size and shape (Fox et al. 2005:1307).

 

Electronic pharmacy and electronic prescribing

Fox et al. (2005) study changes in the pharmaceutical landscape induced by the Internet. These include, for example, 1) the electronic transfer of prescriptions, 2) the launch of e-pharmacies where people buy medicines online after completing a questionnaire checked by a pharmacist, and 3) the establishment of e-pharmacies combined with an online medical consultation – a system that exists in the US and has not yet emerged in the UK due to constraints on direct to consumer advertising (DTCA) of prescription only medicines (POM).

Through direct advertising of prescription-only medicines, pharmaceuticals might become viewed as “goods to be marketed” and less as biochemical substances that can be dangerous and should be regulated (Fox et al. 2005:1482). The authors point out that e-pharmacy and e-clinics could undermine the role of professionals in sustaining a balance between ensuring “public safety and freedom of choice and autonomy” (Fox et al. 2005:1483, as cited in Walley et al. 2000). Given increasing attention on antibiotic resistance the sale of antibiotics is particularly troubling.

Dixon-Woods et al. (2013) explore the use and effects of an electronic prescribing and decision support system (ePDSS) in an English hospital. By introducing the electronic system the number of prescribed medications that were not administered could be reduced. Omitted doses – especially of antibiotics – were responsible for a considerable number of deaths, severe injuries and safety incidents in UK hospitals. The detection of errors in administering drugs led to “omission of care” meetings where practitioners (primarily nurses) were reviewed for possible negligent actions. These gatherings were considered as a “stressful, high-impact ordeal that they wished to avoid” (Dixon-Woods et al. 2013:443). Through this “technovigilance” system the hospital’s executive team monitored staff’s behaviour and fostered a “blame culture” where individuals were directly called to account for their actions (Dixon-Woods et al. 2013). Because they were aware of being observed, some became preoccupied with engaging with the computer program such that their actions would appear justified and spending less time and attention to other aspects of care provision that were not being subject to electronic surveillance “(…) Instead of being able to look after the patient, he spends his day looking back, making sure everything is as it should be on the system” (2013:444). The authors conclude that in order to provide a more comprehensive picture of quality care, patients’ experience and executives’ check on the clinical area should be adjoined to electronic data.

 

Conclusion

This short review provides a glimpse into research on e-health carried out in Europe so far by Pols, Milligan, Mort, Oudshoorn etc. mainly in the field of science and technology studies. This far, anthropological inquiries have been limited. Needed are anthropological studies of self-medication, online consultation of patient experts participating in open forums, the use and impact of online drug stores, online prescriptions/consultations and response to health games being introduced in the name of health education. Such studies will raise issues linked to power relations and whether self medication is a form of empowerment or domination by pharmaceutical companies, perceptions of generic drugs, and so on. It also raises issues related to how patient practitioner relations are influenced by online searches before and after consultations, adherence to medical advice and how patients, family members, hospital staff, pharmacists, stakeholders etc. use online sources and how they feel about changes in the flow of information on the Internet. Anthropological studies which provide thick descriptions of e-health use and how it influences health care seeking, health care, and health optimization as seen by those who search for information and products are clearly needed. By exploring e-health in-depth in different social and cultural contexts, we will gain insights into other aspects of culture such as the penetration of neoliberal ideas and responsiblization.

 

 

References

Dixon-Woods, M., Redwood, S., Leslie, M., Minion, J., Martin, G.P., & Coleman, J.J.

2013 Improving Quality and Safety of Care Using “Technovigilance”: An Ethnographic Case Study of Secondary Use of Data from an Electronic Prescribing and Decision Support System. The Milbank Quarterly 91(3):424-454.

Fox, N., Ward, K., & O’Rourke, A.

2005 The “expert patient”: empowerment or medical dominance? The case of weight loss, pharmaceutical drugs and the Internet. Social Science & Medicine 60:1299-1309.

Fox, N., Ward, K., & O’Rourke, A.

2005 The birth of the e-clinic. Continuity or transformation in the UK governance of pharmaceutical consumption? Social Science & Medicine 61:1474-1484.

Milligan, C., Roberts, C., & Mort, M.

2011 Telecare and older people: Who cares where? Social Science & Medicine 72:347-354.

Mort, M. & May C.R., & Williams, T.

2003 Remote Doctors and Absent Patients: Acting at a Distance in Telemedicine? Science, Technology & Human Values 28(2):274-295.

Oudshoorn, Nelly

2008 Diagnosis at a distance: the invisible work of patients and healthcare professionals in cardiac telemonitoring technology. Sociology of Health & Illness 30(2):272-288.

Pols, J., & Moser, I.

2009 Cold technologies versus warm care? On affective and social relations with and through care technologies. European Journal of Disability Research 3:159-178.

Roberts, C., Mort, M. & Milligan, C.

2012 Calling for Care: “Disembodied” Work, Teleoperators and Older People Living at Home Sociology 46(3):490-506.

Ruckenstein, Minna

2015 Uncovering everyday rhythms and patterns: Food tracking and new forms of visibility and temporality in health care. In Techno-anthropology in health informatics: methodologies for improving human-technology relations. Lars Botin, Pernille Bertelsen, Christian Nøhr, ed. Pp. 28-40. Amsterdam : IOS Press.

Staroste, Elena

2012 Die Bedeutung virtueller Handlungsräume für Menschen mit Diabetes.
Diploma thesis, University of Vienna. Faculty for Social Sciences.

Walley, T., Earl-Slater, A., Haycox, A., & Bagust, A.

2000 An integrated national pharmaceutical policy for the United Kingdom? British Medical Journal 321:1523-1526.

Westermarck, Josefin

2015 Quitting drugs and forming peer support in a pro-drug internet site. An ethnographic case study. Master thesis, University of Helsinki. Faculty of Social Sciences.

WHO

2011 mHealth: New horizons for health through mobile technologies. http://www.who.int/goe/publications/goe_mhealth_web.pdf, accessed October 13, 2016.