Critical Anthropology for Global Health (CAGH)
Takes a Stand: e/m-Health and Telemedicine
Statement drafted by
Tanja Ahlin (University of Amsterdam)
Mark Nichter (University of Arizona)
November 14, 2015
In November 2013, several members of the Critical Anthropology for Global Health (CAGH) special interest group launched a Takes a Stand (TAS) initiative on e/m-health and telemedicine. At the core of this decision was the recognition that e/m-health and telemedicine may have a significant impact on understanding, practicing and organizing healthcare globally as well as locally. E/m-health and telemedicine are innovative practices that are still in the making; the shifts in healthcare they stimulate are gradual, but profound. The stakes are high especially for the final users and practitioners of e/m-health and telemedicine, as there is a strong commercial aspect to these technologically enhanced health practices; questions have also been raised about power distribution of various actors involved. At the same time, there is indication that e/m-health and telemedicine have a lot of potential to improve healthcare, especially for chronic patients, elderly and those living in remote areas. With the help of several CAGH members, we have drafted a statement to encourage anthropologists to study e/m-health and telemedicine in more depth. Below, we briefly describe what e/m-health and telemedicine are. We then explain why we believe this is an important topic for anthropologists to address. Finally, we propose 12 areas of research, with suggestions for particular research questions. While studies of these relatively new phenomena have been made in other disciplines, few anthropologists have touched the topic so far. We urge anthropologists to become involved, as their training in ethnography makes them particularly suited to provide a more nuanced picture, and thus a more productive view, of e/m-health and telemedicine. We also invite anthropologists already familiar with or conducting research on this topic around the world to shed light on literature that has been published in languages other than English.
What are e/m-health and telemedicine?
A number of innovative health care and health monitoring practices have been encompassed by the terms e-health, m-health, telemedicine, and telecare. Definitions of these terms are diffuse. A systematic review of literature produced 51 unique definitions of e-health alone (Oh et al., 2005). For the purposes of this review we will adopt the World Health Organization (WHO, 2011a) definition of e-health as “the transfer of health resources and health care by electronic means,” which primarily entails “the delivery of health information, for health professionals and health consumers, through the Internet and telecommunications.” E-health includes the transfer of health-related information in all possible directions. As a part of e-health, telemedicine focuses more specifically on “the use of telecommunications to diagnose and treat disease and ill-health” (WHO, 2011a) primarily by medical professionals (Allen, 2000). A growing component of e-health is m-health, or mobile health, which refers to medical and public health practice supported by hand held mobile devices (WHO, 2011b) such as mobile phones and other wireless devices. E-health also encompasses the use of electronic health records, consumer health informatics, health knowledge management, virtual health care teams, population health management and health care information systems (Wrighton, 2011).
E-health in its broadest sense, that is as the use of information and communication technologies (ICT) for health, has been recognized as one of the most rapidly growing fields in health (WHO, 2013). This is hardly surprising, given the rate at which Internet and mobile phone use are spreading around the globe. The number of mobile cellular subscriptions worldwide has grown from less than 1 billion in 2000 to more than 7 billion in 2015. Globally, 3.2 billion people are currently using mobile devices, of which 2 billion live in developing countries (International Telecommunication Union (ITU), 2015).
Internet, also accessed through mobile phones, is increasingly being used to seek information about 1) the possible diagnosis, cause, severity, or trajectory of a health condition; 2) health care seeking options and treatment alternatives; 3) medication use, effectiveness, and side effects; 4) clinical trials; 5) patient groups willing to share experiences; 6) population based data on the distribution of health problems, risk factors, and genetic predispositions; 7) preventive and promotive health advice; and so on. In the United States, 59% of adults report having looked online for health information and 35% of them say they have used the Internet specifically with the intention to determine the medical condition for themselves or someone else (Fox and Duggan, 2012, 2013). Many access the Internet after seeing a practitioner to gain more information about the health problem, learn if additional treatment options exist, or research what the practitioner has advised. Family and friends use the Internet to gather information about another’s health condition as an idiom of concern as well as to participate in health care decision making.
Why are e/m-health and telemedicine important research topics for anthropologists?
The recent proliferation of information technologies is critically reconfiguring health-related practices, whether at bodily, institutional, or population levels. The rise in flows of information makes the study of biocommunicability (i.e., power relations within mediated information) and biosociality vital health social science concerns. The use of e/m-health may grow spontaneously with individuals’ becoming more and more accustomed to information seeking and posting information about lessons learned from their health care experience. A growing number of websites and online health forums are accommodating exchange of health-related information (e.g., Oh, 2012; Neumark et al., 2013; Rutten et al., 2012). It is also worth noting that information seeking and sharing is in step with neoliberal ideas related to taking greater responsibility for one’s health practices. This is being encouraged by both private and public organizations. For example, ICT in health care has been strategically promoted by the European Commission (EC) as a part of its digital agenda through action plans for e-health (2007–2013, 2013–2020; EC, 2007, 2012), which among other things envisaged e-health as an important solution to dealing with population aging (Community Research and Development Communication Service, 2013).
In 2005, WHO adopted a resolution on e-health as a means to promote the strengthening of health systems in countries through e-health, build public-private partnerships in ICT development and deployment for health, support capacity building for the application of e-health in WHO member states, and develop and adopt standards (WHO, 2013). Based on the recommendations of the Commission on Information and Accountability for Women’s and Children’s Health (CoIA), 75 target countries, including the world’s poorest 49 nations, should have integrated the use of ICT in their national health information systems and health infrastructure by 2015 (WHO, 2013). In the global South, strategic collaborations have been forged between India and Africa in order to establish the Pan-African e-Network (PAeN) for Telemedicine and Tele-education across 53 African nations (African Union Commission, 2004; Duclos, 2012, 2014). In India, a telemedicine platform is being established by the Apollo Hospitals, a private health service provider that established a non-profit subsidiary, Apollo Telemedicine Enterprise Limited, as early as in 1999 to carry out research on development and implementation of telemedicine in rural and remote areas (Bowonder, Bansal and Giridhar, 2005).
E/m-health is being promoted as a means to address some of the most pressing issues in health care organization and delivery. These issues include, among others, inefficient management of medical records; poor access to care due to lack of health care practitioners, especially in rural areas; a rising number of people in need of health monitoring, such as the elderly and chronically ill; inefficiencies in scheduling, triage, and payment of health care professionals; poor quality of care due to gaps in history and continuity of care; lack of patient empowerment/participation; and rising health care costs, leading to the need to reduce and maximize the number of visits to health care facilities as well as reduce costly delays and errors in the process of administration and treatment. Rather than stand-alone solutions, e/m-health strategies promoted to address these and other issues “should be viewed as integrable systems that should fit into existing health system functions and complement the health system goals” (Labrique et al., 2013: 160-161).
Despite the enthusiastic response of international organizations, industry, and national governments, challenges to implementation of e/m-health and telemedicine persist (Tomlinson et al., 2013). In some cases the proposed e/m-health solutions were not well accepted by their intended users (López and Domènech, 2008). The failure to introduce ICT in health beyond pilot projects has been attributed to differences between how e-health designers and end-users engage with their local worlds. For this reason, the International Society for Telemedicine and eHealth (ISTeH) added the consideration of end users and civil society to its previous framework for e-health, which had been based on the triad of academia, government, and industry (Kwankam, 2012).
How can anthropologists contribute?
The ethnographic studies of e/m-health published to date tend to come from the fields of science and technology studies (STS) and sociology (e.g., Pols, 2012; Lupton, 2014a), but anthropologists have been little involved. Ethnography has played a considerable role in studying e/m-health and telemedicine projects, but often it was used only instrumentally, as one tool among others for need specifications, design, and evaluations. As a research method, ethnography has thus not been granted its full potential in revealing the complexities of various practices and situations. Anthropologists could also emphasize the importance of studying e/m-health and telemedicine practices as embedded in a wide variety of local contexts. We suggest that anthropologists should amend this, and thereby add significantly to the understanding, assessment, and improvement of e/m-health interventions. This would include formative research on both receptivity to using different forms of technology for particular purposes by different stakeholders and user response to programs initiated as well as local innovations using similar technology in fields outside health. Innovations such as e/m-health and telemedicine entail more than just the introduction of new technologies; they result in new relationships, expectations, and responsibilities (Pols, 2012, cf. Duclos, 2015).
In what follows we identify several issues for formative research and ethnographies of the social life of e/m-health and telemedicine. We call for 1) analytical research of e/m-health and telemedicine as temporarily and locally situated practices embedded in global economic and political developments, and 2) research pertaining to understanding and contributing to various applications of e/m-health and telemedicine.
- History and contextualization of e/m-health and telemedicine
How was e-technology for the delivery of health care envisioned to interface with medicine? What interest groups were behind this vision and why? How were these visions transformed over time based on shifts in motives, progress in technologies, and the reactions of all stakeholders (e.g., Park et al., 2012; Braitberg 2002; Cartwright, 2000; Bareiss, 2001)? Researchers have already called attention to a series of market-based issues related to the commercialization and commodification of health care that require further research (Lupton, 2014b, 2014c, 2014d, 2015; Brijnath, 2012; Cartwright, 2000; Sinha, 2000; Cleland, 2002; Orizio and Gelatti, 2010; Duclos, 2014). For example, how are power structures of patients, practitioners, and heath care organizations changing in this context? Research on these topics would provide data on lessons learned which, in turn, could influence future problem solving in the implementation and practice of e/m-health and telemedicine.
- Digitalization of health records and data storage
Beyond making access to patient records easier, m-health has enabled health workers to electronically register their services and submit point-of-care test results through ICT systems, so that patient histories may be updated from the field (Labrique et al., 2013). How does the introduction of e/m-health into the management of health records influence health care practices within and outside health care institutions, including their impact on patient-practitioner communication?
Moreover, what is the role of corporations as information collectors and gatekeepers? Through practices such as telemonitoring and personal self-tracking devices and applications, data about people’s everyday health condition is collected, stored and managed remotely (Lupton, 2013, 2014d, 2015; Sarrafzadeh and Sykes, 2012; Bin-Sabbar and Al-Rodhaan; 2013; Leffingwell et al., 2013). Issues of trust would be important to explore related to who has access to a patient or citizen’s health data. What data is being shared, how is it being used, for what purposes and by whom, and are people aware of data collection practices (e.g. Pine, 2011; Fischer and Monahan, 2008; Lupton, 2012, 2015)? The encroachment of corporations into the realm of e/m-health and telemedicine needs to be monitored (Monahan and Fisher, 2011; Baba 2013; Lupton, 2014a, 2014c).
- Health care organization
Health care teams are affected by the use of ICT, as a review by Geraldine Fitzpatrick and Gunnar Ellingsen (2013) shows. Several studies so far have addressed how ICTs influence working relations and team dynamics, how they change care routines, and what impact they have on quality of health care (e.g., Oudshoorn, 2011; Gagnon et al., 2012; May et al., 2003; Pols, 2010a, 2010b, 2010c, 2012; Finch et al., 2003, 2005; Vedder, 2013; Hendy, Chrysanthaki and Barlow, 2014). Other studies have shown how the social relations of care (e.g., for the elderly or chronic patients) are being re-shaped by the possibilities offered by e/m-health (e.g., Roberts and Mort, 2009; Pols and Moser, 2009; Miller, Roberts and Mort, 2011; Pols, 2012). Some questions remain for anthropologists to unpack, e.g., how do new ways of auditing care practices in the name of efficiency and cost effectiveness influence how workers function in health care organizations? What is the impact of electronic health records on health care organization and administrative practices in hospitals (Baba 2013)? Finally, how does ICT change the practice of diagnosis, which can now be done at a distance (e.g., Oudshoorn 2008; Andersen et al. 2011)?
- E/m-health and patient-practitioner relationship
Anthropologists need to address the questions of the impact of ICT on patient-practitioner relationship and clinical practice, where challenges include confidentiality, professional boundaries, effective and competent practice, and unanticipated contact (Fantus and Mishna, 2013; Fujioka and Stewart, 2013). Hitherto, some studies have argued that the increasingly available health-related information online may contribute to democratization of medical knowledge and increase patient confidence and empowerment, making the doctor–patient relationship less hierarchical and more oriented towards an equal partnership and collaboration (for an overview, see Ahlin 2011; Marcinkiewicz and Mahboobi, 2009; McMullan, 2006). Others have contested such views and questioned the motives behind the promotion of digital health technologies as a way to encourage patients in self-management and self-responsibility (Henwood et al., 2003; Lupton, 2013, 2015).
There is a need to investigate online health forums and support groups and to assess health information available online (e.g. Barker 2008). Anthropologists would need to address the production and presentation of health related (dis)information published online and the factors that influence what people access and in what sequences (e.g., Dobransky and Hargittai, 2012; Lupton, 2014b), from what sites appear first during information searches to where people are later redirected. What kind of health-related information is shared online, by whom, and for which audience? People use the Internet to interpret, produce, and circulate knowledge, for example in relation to genetic conditions (Schaffer, Kuczynski and Skinner 2008). How is the information found online consumed, but also contested, and how does it impact the interaction between patients and their relatives and health care practitioners and personnel? Also, how is the role of the healthcare practitioners changing as they increasingly prescribe websites as sites of information and serve as filters for reliable sources of information? This raises questions about the criteria on the basis of which practitioners and healthcare organizations choose the sources of information they recommend. How do people, both practitioners and patients, filter information in or out, how do they decide which assemblages of information are trustworthy and which not, and whom do they trust as filters?
Moreover, how are the roles of both patients and health care staff changing due to the influence of ICT (e.g. Finch et al. 2008; Nielsen 2015a, 2015b; Dedding et al. 2011)? Who is the “expert” on a particular health condition, the practitioner, the patient, or the technology (e.g., Pols 2014)? Consequently, who bears the responsibility for decisions made? In relation to electronic health records, would patients have access to these files to see what is charted, and perhaps to edit information? Taking patients and practitioners in their new role as the users of e/m-health and telemedicine technologies, studies in STS have looked into the misuse and/or disuse of telecare devices and the patients’ interpretations of this kind of services (e.g., López and Domènech, 2008). Further investigations in this direction are called for to better understand the circumstances in which certain ICTs are adopted by their users or not (cf. Akrich 1992; Oudshoorn and Pinch 2003).
- Tele-training and education of health care professionals
There has been some evidence that in countries where travelling long distances is affected by poor infrastructure and there are great socio-economic and demographic disparities between rural and urban areas, tele-education of health care professionals is seen as an important strategy to increase the number of highly trained health care staff (e.g., Fernández and Ovaido, 2011; Mahadevan et al., 2012; Mars, 2013) or even to provide training to areas in violent conflicts (Ghanem et al., 2012). Anthropologists could investigate in detail who is developing what kind of tele-training programs for health care and toward what ends, as well as the coordination and contestation of such programs. The impact of such training should be evaluated through ethnographic study, particularly in terms of governance, democratization of health, certification, and the creation of health care professionals’ communities that arise as a consequence of tele-education. Where and how is the training of health care professionals to practice e/m-health and telemedicine provided, and what challenges does this entail (Vaccaro and Lambie, 2007)?
- Public health interventions
In some countries, the potential of mobile phones for health has been recognized by particular public health institutions. For example, text messages have been used to influence behaviour change (Hingle et al., 2013) and manage disease in cases of chronic illnesses (Cole-Lewis and Kershaw, 2010). In Peru, mobile phones have been proved to be a highly efficient and cost-effective tool in preventive health care, especially among the poorest households and households in areas with the highest incidence of dengue (Dammert, Galdo and Galdo, 2012). How and to what extent can mobile phones improve the timeliness and effectiveness of public health interventions? In what ways may they be used, if at all, to reduce non-adherence and delay in health care seeking?
- Monitoring treatment, self-care and self-tracking at a distance
E/m-health and telecare are used to monitor and care for patients with chronic illness, taking medication and needing to manage home treatment for diseases like chronic lung disease (Pols 2012), diabetes (Paré et al. 2010), or Buruli ulcer. How are these monitoring projects conceived and implemented in different contexts around the world? What is their impact on patients’ adherence to treatment regiments, and how do they influence identification of serious complications that require immediate clinic visits? The practice of monitoring also influences patients’ families as they become involved in tracking the progress of treatment. How does increased family presence influence communication and trust between patients, health care centers, and the community at large?
Monitoring is not necessarily carried out between the patient and the health practitioner; people who are not necessarily patients may be using various tracking devices and applications for self-care and self-monitoring (e.g. Lupton 2014d). How are practices related to health prevention programs, or how could they be?
- Epidemiological monitoring of diseases
ICT may be used in epidemiological monitoring and surveillance of illness episodes, medicine use, and other health related issues through real time data mining of Internet use and mobile traffic as well as through proactive local reporting through electronic means (e.g., Dugas et al. 2013, Lazer et al. 2014). For example, mobile phones may be tracked to model the travelling of the malaria-causing parasite (Buckee et al., 2013), and in Madagascar, a short message service has been used in a sentinel surveillance system for influenza-like illness (ILI) based on data collected from general practitioners (Rajatonirina, 2010). In Mexico, text messages and online search queries have been tracked in order to follow and survey the spread of the H1N1 flu pandemic (Krisberg, 2010). How does such reliance on ICT change the practice of epidemiology, data collection, and consequent public health decision-making?
- Online health communities
Through the lens of biosociality, anthropologists could research how patients and their family members proactively use ICT to secure health care for themselves and their family, friends, and so on. Inquiry into this topic could range from the practice of consulting health practitioners at a distance to the use of ICT to mobilize support networks in which people share concerns and experiences, as well as critically assess the available health care options. How does ICT, for example online support forums and webcam-supported patient communities, encourage sharing of practical solutions that the “expert patients” (Edgar, 2005) create through their practice of living with a chronic illness (Pols 2013b)? How are online groups and chat rooms that are created by those sharing an illness used and what are they useful for? They may, for example, be used to share feelings of connectedness rather than only for sharing information, or to bolster the illness identity. Professional and lay patient organizations could particularly benefit from such engaged academic research.
On the practitioner side, knowledge may be transferred through online communities among practitioners of different kinds (Stewart and Abidi, 2012). Research is needed to explore this emergent practice, which includes provider-to-provider sharing of information and experience. Moreover, how are health-related online forums a place of negotiation of power and identity, for example when they are used by activist groups for a particular health condition, such as autism, or public health practices, such as vaccination?
- Perceptions and expectations of (potential) users towards e/m-health
The ways in which people perceive health-related technologies and what they expect from them is related to how these technologies are represented in general discourses and the media, including the Internet. What is the image of various e/m-health devices and practices in different local contexts, how does it come about, and what are the influences of these images (i.e., hype or suspicion) on the uses of e/m-health?
- Legislation and ethics
Anthropologists should carry out an evaluation of guidelines and (lack of) legislature regarding e/m-health and telemedicine in countries around the world (e.g., Leenes and Kosta, 2013). While the use of ICT is potentially highly transformative and useful, anthropologists should investigate how such technologies might be used to constrain the scope and practice of what constitutes citizenship (cf. Akrich 1992). For example, how does the encouragement of e/m-health and telemedicine practices interact with the notion of a self-reliant, independent patient-citizen, and how is responsibility distributed among various stakeholders (e.g., Lupton 2013)?
- E/m-health and telemedicine in global health
Questions about e/m-health and telemedicine differ according to local contexts. How does the implementation and use of these practices differ in contexts with different levels of access to healthcare services? What local, national, international, and global power structures are involved, and how are they impacted and influenced by e/m-health?
How can you contribute to the initiative?
E/m-health and telemedicine are global phenomena that have an increasing impact on people’s understanding of health care needs as well as health practices that effect their lives. The members of this SIG initiative have been active in organizing panels and presenting papers on e/m-health and telemedicine since the AAA meetings in 2012. We welcome all contributions on this topic, be they in the form of research reports, suggested references and links, or comments on the statement and proposals for future AAA meeting panels. We invite all anthropologists working on e/m-health and telemedicine in any part of the world to write short briefs (up to 1000 words) about their research to be published on the CAGH website. We particularly encourage anthropologists working in non-English contexts to join this initiative.
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Tanja Ahlin, University of Amsterdam
Mark Nichter, Univeristy of Arizona
Victor Braitberg, University of Arizona
Nora J. Kenworthy, Columbia University
Vincent Duclos, University of Monteral
Karen Dam Nielsen, University of Copenhagen
 Biocommunicability (Briggs and Hallin 2007; Briggs and Nichter 2009) is an analytic for examining how different discourses circulate and interact, and how individuals and groups involved in their circulation interpret and make use of these discourses in different ways. It may be used to ask questions about what social imaginaries are being used, by whom, and in what circumstances, and what normative assumptions are embedded within the way information is flowing.