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- Convenors:
-
Kate Hampshire
(Durham University)
Trudie Gerrits (University of Amsterdam)
Heather Hamill (University of Oxford)
Rachel Casiday (University of Wales Trinity Saint David)
- Location:
- FUL-201
- Start time:
- 10 September, 2015 at
Time zone: Europe/London
- Session slots:
- 3
Short Abstract:
Globalisation in healthcare presents serious trust problems for patients and other actors navigating complex, dispersed and opaque therapeutic arenas. We invite empirically-grounded and theoretically-engaged papers addressing issues of trust, mistrust or misplaced trust in any area of global health.
Long Abstract:
The globalisation of healthcare is associated with the emergence of increasingly complex, dispersed and often virtual therapeutic arenas, with a proliferation of actors and technologies. In this context, establishing trust becomes a major challenge for prospective patients and other actors operating across (and often blurring) the local and global, state/non-state and formal/informal. From the perspective of patients/consumers, trying to distinguish between bona fide practitioners (itself a slippery concept) and 'charlatans' trying to make a quick buck becomes a serious challenge, particularly in the context of widespread drug counterfeiting and weak regulation. Developments in electronic telecommunications have enabled the bridging of longer geographical distance between healers, medicines and patients, enabling information, medicines and money to move thousands of miles very quickly; online pharmacies, for example, enable the bypassing of health professionals and national regulatory systems. Practices of establishing trust, and the risks of mistrust and/or misplaced trust, play out all the way up the supply chains of drugs and other therapeutic technologies in the opaque and weakly-regulated global health marketplace. While these issues have been widely discussed in the literature, they remain seriously under-theorised, and often draw on very 'thin' empirical material. This panel invites contributions from researchers and practitioners working on any area of global health where trust is an issue. We particularly encourage papers that draw on detailed empirical material but also attempt to draw on appropriate (and perhaps innovative) theoretical approaches/tools to understand and respond to 'trust problems' in contemporary global health.
Accepted papers:
Session 1Paper short abstract:
Parents who abandoned their child’s cancer treatment showed a religious-based logic running in parallel to the oncology teams’ scientific belief system and logic. Poverty and misgivings drive the parents to turn to their church community where traditionally they obtain answers (miracles) and support (financial and emotional).
Paper long abstract:
The parents of children with cancer in El Salvador, who traditionally have relied on their church community for material and spiritual support, expressed their belief in a miracle cure and abandoned their child’s medical treatment. Consequently, most of these children relapse and die from their disease.
The parents were convinced that a miraculous healing had occurred or would soon occur, and trusted that God would protect their child from cancer better than the medical treatment could. They framed their faith-based accounts in living circumstances of material scarcity and vulnerability, and/or misgivings towards their child’s treatment and/or medical procedures. Their bad past experiences with the health system and in general with institutions supposed to provide services for the needed fed the lack of trust in a treatment that showed as many risks for their child’s life as the cancer. The parents viewed reliance on God’s power to perform a miracle as a reasonable alternative therapeutic option.
The oncology team relies instead on their own scientific belief system to persuade the parents to continue the child’s treatment. Provision of information and material resources to help the families were not always a direct way to build their trust on the treatment and brought new sources of uncertainty.
In the context of structural vulnerability and mistrust towards institutions, and the uncertainty about treatment procedures and results, abandoning treatment relying on religious faith and the hope for a miracle seemed to the parents the more suitable resource for coping with and curing their child’s cancer.
Paper short abstract:
In developing countries, mainly in major cities, the increasing variety of medicines available in the market creates new opportunities of choice. This paper aims to present and discuss the discourses around the conception of trust and the criteria behind those choices in Maputo, Mozambique.
Paper long abstract:
As a result of globalization processes, pharmaceuticals are nowadays part of the materia medica of all societies, assuming a large variety of meanings and particularities within different contexts. In developing countries, mainly in major cities, the increasing variety of medicines available in the market also brings new opportunities of choice - not only regarding the types of resources but also its provenience. Individuals use different criteria to choose among the available medical and therapeutic resources. Trust is one of them. But how is this trust constructed and how does it configure consumption practices?
This paper aims to discuss these questions, based on an ongoing research about the use of medicines in Maputo, the capital of Mozambique. The empirical data that supports this presentation was collected through the conduction of 7 focus group discussions (FGDs), with a total of 42 participants. The aim of these FGDs was to discuss, among other issues, consumption experiences and conceptions of quality, efficacy, safety/risk, etc. regarding pharmaceuticals, traditional herbs and other substances.
The FGD showed how, at a more abstract level, when it comes to trust, it is difficult to separate the discussion between resources and their providers, and more generally the medical systems behind them. This was even more evident when it comes to trust on 'science' versus 'experience', on what is formal and informal, official and unofficial. However, concrete examples showed how 'slippery' this construction of trust seems to be in practice, and how the criteria used to evaluate different resources can vary.
Paper short abstract:
This paper focuses on Mozambican couples resorting to assisted reproduction technologies (ARTs) in South Africa and on the importance personal, local and transnational, social networks have as trust building mechanisms regarding foreign clinical sites and global ARTs.
Paper long abstract:
In Maputo, Mozambique, reproduction is often at the core of marriage relationships and parenthood is highly valued. When facing a situation of involuntary childlessness women, or couples, are active agents in the quest for a wanted pregnancy and willing to make numerous emotional, economical and therapeutic efforts. If they can afford it, couples frequently engage in reproductive travel to the neighbouring South Africa. These are journeys with an undisclosed and uncertain reproductive outcome, through therapeutic pathways paved by the interaction with often bewildering biomedical technologies.
Trust in the clinical site and confidence on a positive outcome is at the core of every couple's therapeutic navigation. Therefore, transnational ART patients strategically plan the reproductive travel destination. This planning is always done according to informal social networks involving close (trustable) relationships and word-of-mouth information coming from extended social networks of previous ART users. These national and transnational prospection and support networks are activated while seeking treatment but also throughout couples' therapeutic pathways. While in treatment in South African clinics, Mozambican patients (women) often assemble as informal support groups through which they share information and experiences. These peer (bio)social relations are not only triggered by shared affliction but also by a shared navigation through the realm of global biomedical technology, such as ARTs, on a foreign clinical site.
This paper builds on empirical and theoretical insights into trust strengthening mechanisms travelling Mozambican couples put into practice while prospecting for assisted reproduction (ART) in South Africa as well as during their navigation throughout those treatments.
Paper short abstract:
We apply the principles of Signalling Theory to understanding how prospective patients in Ghana come to trust certain healers and how healers try to signal their trustworthiness, and consider the usefulness of this approach in relation to other trust problems in global health.
Paper long abstract:
Today's increasingly globalised and dispersed healthcare arenas are characterised by a proliferation of therapeutic possibilities that pose serious trust problems for prospective patients. The decision to trust a healer or medicine is often based on limited (and biased) information with little possibility of redress if something goes wrong. The implications of misplacing trust for both individual and public health are serious. Such risks are widely discussed in the literature, but attempts at rigorous theorisation are limited. In this paper, we propose that signalling theory - an approach used principally in economics and evolutionary biology - offers a useful tool for understanding trust problems in healthcare. After outlining the basic principles of signalling theory, we apply it to an empirical example: how prospective patients in Ghana come to trust certain healers and how both healers and patients engage in 'signalling games' that enable production of trust. We conclude by considering the potential contribution of signalling theory to other 'trust problems' in contemporary global health.
Paper short abstract:
This paper focuses on Jehovah’s Witnesses and analyzes ways in which religious groups could effectively deploy their own structures, such as Hospital Liaison Committees, in establishing trust between doctors and religious patients without compromising the health care outcome of such encounters.
Paper long abstract:
This paper focuses on Jehovah's Witnesses (JWs), a globally active, yet anthropologically understudied religious community whose refusal of blood transfusions is often exemplified in bioethical and medical literature as particularly "troublesome" for the biomedical profession. Members of the JW community are constantly and diligently looking for hospitals and physicians who would be willing to refrain from blood transfusions. Such doctor patient encounters have been particularly imbued with "trust issues." Over 20 years ago, however, the Governing Body of JWs located in Brooklyn, NY, established a global network of Hospital Liaison Committees (HLCs). The network often assists in the patient's search by providing names of "collaborating" physicians. It thus helps patients to orient themselves in the local therapeutic landscape and provides interested physicians with relevant (mainly biomedical) literature on transfusion alternatives.
This paper draws on a nine month ethnographic research with Jehovah's Witnesses, including members of the HLCs, and physicians carried out primarily in Berlin, the city with one of the biggest HLCs in Germany. I argue that while "abstaining from blood" can be characterized as a "collectivizing moment" of biological citizenship (Rose 2007, Rose & Novas 2005) in the case of JWs, the network of HLCs plays an active role in constructing therapeutic citizenship (Nguyen 2005). By focusing on JWs, I attend to ways in which religious groups could effectively deploy their own structures, such as HLCs, in establishing trust between two parties―doctors and religious patients―without compromising the health care outcome of such encounters.
Paper short abstract:
This paper explores how newly imported homeopathic techniques were accepted by Japanese patients and how trust between patients and practitioners has had an effect on therapeutic efficacy. The analysis will centre on relationships between the patients and the practitioners in the ethnographic data.
Paper long abstract:
Alongside the globalisation of medicine, complementary and alternative medicine (CAM) has become increasingly popular worldwide over the past decades. Japan has not been an exception to this trend. The rise of CAM in Japan has brought a proliferation of therapies other than Japanese traditional medicine like Kampō. Homeopathy, for example, was first imported to Japan in the late 1990s.
This paper explores how homeopathy was accepted by Japanese patients and how trust between patients and practitioners has had an effect on therapeutic efficacy. The analysis will centre on relationships between the patients and the practitioners in the clinic and ethnographic data obtained from interviews.
CAM therapeutic practice varies according to locality and socio-cultural context. Homeopathy is especially sought after in Japan, for example, as treatment for emotional issues amongst patients seeking non-stigmatized treatment. The supportive conversations that take place between patients and practitioners during consultations are understood as having potential therapeutic value.
I thus argue that homeopathy is practised partly as a talking therapy because of the comparatively long 'homeopathic conversation' that forms the core of any consultation.
It is particularly significant because Japanese people tend to be sceptical about psychological treatment (Lock 1980, Ohnuki-Tierney 1984, Kitanaka 2012). In this sense, a solid bond of trust between patient and practioner is essential for successful results.
Paper short abstract:
Flux and Flu: Configuring Patients and the Public in Epi/Pandemics. This paper explores the tensions and paradoxes inherent in governing discourses surrounding patients and user groups in relation to public understanding, risk, trust and current clinical research of global infectious diseases.
Paper long abstract:
This paper considers the relationships between a nexus of stakeholders, namely academics, big pharma, clinicians, regulators and policy makers, and crucially, the institutional positioning of 'publics' and patients. Dual concepts of risk and trust have long been recognised as central to this set of actors but become acutely relevant in light of changing EU policies concerning clinical trials and data protection legislation coming into force. When coupled with nascent models of conducting clinical trials in context of a public awareness of newly emerging global infectious diseases such as Ebola, Bird flu, Swine flu and H191 it represents a time of cultural ferment. These rapid changes sit uneasily with the traditional patient /doctor relationship of trust (notwithstanding the ambivalence attached to that) at a time when it needs bolstering.
PREPARE, a European research consortium of social scientists and clinicians aims to identify potential barriers to conducting epi/pandemic research. In addition to professional stakeholders) from several Member States (MS), being interviewed via, 1) an on-line survey, 2) secondary data on clinical trial authorisation, 3) ethical approval processes in each MS and via a series of in depth ethnographic style interviews we also included participant observation data from both conducting a workshop and participating in conferences and meetings in associated fields.
A discussion of this data considers the tensions and paradoxes between the burning issue of public involvement and the need to find robust ways of negotiating trust in context of a history and legacy of more instrumental, tokenistic approaches to public involvement.
Paper short abstract:
There is erosion of trust between healthcare providers and regulators in India. A variety of influences, including corporatization of care, regulatory failures, and wider social changes, shape these trust relations, and thereby shape providers’ practices and relations with their patients.
Paper long abstract:
Commentators suggest there is erosion of trust within the health system in India and that there are generally low levels of trust between private providers, public providers, health managers and policy makers. In this paper, the situation of the providers of modern medicine is examined through an exploratory study in an urban setting in western India. This involved an examination of the nature of trust relations and what influenced the shape of these relations. Data on trust relations was collected through face-to-face interviews and focus groups with key informants which included public and private providers, regulators, managers, complimentary medical practitioners and other societal actors including patients/citizens, politicians and the media (N=17). 'Cut practice' dominated informants narratives about trust relations but this was attributed to a small number of 'rotten apples' in the medical profession but was not perceived to influence clinician patient relations. However, there was a perception that trust had broken down between providers and regulators. A variety of influences were evident including high cost of care provision, corporatization of care provision, intense social scrutiny of professional practice, the legal and regulatory environment, and wider social changes may be shaping the context for trust relations within the health care profession, and thereby shaping providers' relations with their patients. The insights gained from this exploratory study can form the basis for action to improve the stewardship and governance of the health system in India.