Morals, morale and motivations in data fabrication: Medical research fieldworkers views and practices in two Sub-Saharan African contexts

AbstractData fabrication, incorrect collection strategies and poor data management, are considered detrimental to high-quality scientific research. While poor data management have been occasionally excused, fabrication constitutes a cardinal sin – scientific misconduct. Scholarly examinations of fabrication usually seek to expose and capture its prevalence and, less frequently, its consequences and causes. Most accounts centre on high-income countries, individual senior researchers and scientists who are portrayed as irrational, immoral or deceptive.We argue that such accounts contain limitations in overlooking data collected in ‘the field’, in low-income countries, by junior researchers and non-scientists. Furthermore, the processes and motivations for fabrication and subversive practices are under-examined. Drawing on two separate ethnographies, conducted in 2004–2009 in medical research projects in sub-Saharan Africa, this paper investigates fabrication among fieldworkers using data from observations and informal conversations, 68 interviews and 7 Focus Group Discussions involving diverse stakeholders. Based on an interpretative approach, we examined fieldworkers' accounts that fabrications were motivated by irreconcilable moral concerns, faltering morale resulting from poor management, and inadequate institutional support. To fieldworkers, data fabrication constituted a ‘tool’ for managing their quotidian challenges. Fabrications ranged from active to passive acts, to subvert, resist and readdress tensions deriving from employment inequalities and challenging socio-economic conditions.We show that geographical and hierarchical distance between high-ranking research actors and fieldworkers in contemporary configurations of international medical research can compartmentalise, and ultimately undermine, the relationships necessary to produce high-quality data. In focusing on fieldworkers, we argue for the inclusion of wide-ranging perspectives in examinations of data fabrication

The Community Lab of Ideas for Health: Community-Based Transdisciplinary Solutions in a Malaria Elimination Trial in The Gambia

Background: Community participation in global health interventions may improve outcomes and solve complex health issues. Although numerous community participatory approaches have been developed and introduced, there has been little focus on "how" and "who" to involve in the implementation of community-based clinical trials where unequal distribution of power between implementers and communities pre-exists. Addressing how to achieve community-based solutions in a malaria elimination trial in The Gambia, we developed the Community Lab of Ideas for Health (CLIH): a participatory approach that enabled communities to shape trial implementation. Methods: As part of transdisciplinary research, we conducted qualitative research with in-depth interviews, discussions, and observations in 17 villages in the North Bank Region of The Gambia between March 2016 and December 2017. We designed an iterative research process involving ethnography, stakeholder-analysis, participatory-discussions, and qualitative monitoring and evaluation, whereby each step guided the next. We drew upon ethnographic results and stakeholder-analysis to identify key-informants who became participants in study design and implementation. The participatory-discussions provided a co-creative space for sharing community-centric ideas to tackle trial implementation challenges. The proposed strategies for trial implementation were continuously refined and improved through our monitoring and evaluation. Results: The CLIH incorporated communities' insights, to co-create tailored trial implementation strategies including: village health workers prescribing and distributing antimalarial treatments; "compounds" as community-accepted treatment units; medicine distribution following compound micro-politics; and appropriate modes of health message delivery. Throughout the iterative research process, the researchers and communities set the common goal, namely to curtail the medical poverty trap by reducing malaria transmission and the burden thereof. This innovative collaborative process built trust among stakeholders and fully engaged researchers and communities in co-creation and co-implementation of the trial. Discussion: The CLIH approach succeeded in touching the local realities by incorporating a spectrum of perspectives from community-members and discerning project-derived knowledge from local-knowledge. This process allowed us to co-develop locally-oriented solutions and ultimately to co-establish an intervention structure that community-members were ready and willing to use, which resulted in high uptake of the intervention (92% adherence to treatment). Successfully, the CLIH contributed in bridging research and implementation

Injections, cocktails and diviners: therapeutic flexibility in the context of malaria elimination and drug resistance in Northeast Cambodia.

BACKGROUND: Adherence to effective malaria medication is extremely important in the context of Cambodia's elimination targets and drug resistance containment. Although the public sector health facilities are accessible to the local ethnic minorities of Ratanakiri province (Northeast Cambodia), their illness itineraries often lead them to private pharmacies selling "cocktails" and artemether injections, or to local diviners prescribing animal sacrifices to appease the spirits. METHODS: The research design consisted of a mixed methods study, combining qualitative (in-depth interviews and participant observation) and quantitative methods (household and cross-sectional survey). RESULTS: Three broad options for malaria treatment were identified: i) the public sector; ii) the private sector; iii) traditional treatment based on divination and ceremonial sacrifice. Treatment choice was influenced by the availability of treatment and provider, perceived side effects and efficacy of treatments, perceived etiology of symptoms, and patient-health provider encounters. Moreover, treatment paths proved to be highly flexible, changing mostly in relation to the perceived efficacy of a chosen treatment. CONCLUSIONS: Despite good availability of anti-malarial treatment in the public health sector, attendance remained low due to both structural and human behavioral factors. The common use and under-dosage of anti-malaria monotherapy in the private sector (single-dose injections, single-day drug cocktails) represents a threat not only for individual case management, but also for the regional plan of drug resistance containment and malaria elimination

Re-imagining malaria: heterogeneity of human and mosquito behaviour in relation to residual malaria transmission in Cambodia

BackgroundIn certain regions in Southeast Asia, where malaria is reduced to forested regions populated by ethnic minorities dependent on slash-and-burn agriculture, malaria vector populations have developed a propensity to feed early and outdoors, limiting the effectiveness of long-lasting insecticide-treated nets (LLIN) and indoor residual spraying (IRS). The interplay between heterogeneous human, as well as mosquito behaviour, radically challenges malaria control in such residual transmission contexts. This study examines human behavioural patterns in relation to the vector behaviour.MethodsThe anthropological research used a sequential mixed-methods study design in which quantitative survey research methods were used to complement findings from qualitative ethnographic research. The qualitative research existed of in-depth interviews and participant observation. For the entomological research, indoor and outdoor human landing collections were performed. All research was conducted in selected villages in Ratanakiri province, Cambodia.ResultsVariability in human behaviour resulted in variable exposure to outdoor and early biting vectors: (i) indigenous people were found to commute between farms in the forest, where malaria exposure is higher, and village homes; (ii) the indoor/outdoor biting distinction was less clear in forest housing often completely or partly open to the outside; (iii) reported sleeping times varied according to the context of economic activities, impacting on the proportion of infections that could be accounted for by early or nighttime biting; (iv) protection by LLINs may not be as high as self-reported survey data indicate, as observations showed around 40% (non-treated) market net use while (v) unprotected evening resting and deep forest activities impacted further on the suboptimal use of LLINs.ConclusionsThe heterogeneity of human behaviour and the variation of vector densities and biting behaviours may lead to a considerable proportion of exposure occurring during times that people are assumed to be protected by the distributed LLINs. Additional efforts in improving LLIN use during times when people are resting in the evening and during the night might still have an impact on further reducing malaria transmission in Cambodia

High Mobility and Low Use of Malaria Preventive Measures Among the Jarai Male Youth Along the Cambodia?Vietnam Border

Malaria control along the Vietnam?Cambodia border presents a challenge for both countries\u27 malaria elimination targets as the region is forested, inhabited by ethnic minority populations, and potentially characterized by early and outdoor malaria transmission. A mixed methods study assessed the vulnerability to malaria among the Jarai population living on both sides of the border in the provinces of Ratanakiri (Cambodia) and Gia Lai (Vietnam). A qualitative study generated preliminary hypotheses that were quantified in two surveys, one targeting youth (N = 498) and the other household leaders (N = 449). Jarai male youth, especially in Cambodia, had lower uptake of preventive measures (57.4%) and more often stayed overnight in the deep forest (35.8%) compared with the female youth and the adult population. Among male youth, a high-risk subgroup was identified that regularly slept at friends\u27 homes or outdoors, who had fewer bed nets (32.5%) that were torn more often (77.8%). The vulnerability of Jarai youth to malaria could be attributed to the transitional character of youth itself, implying less fixed sleeping arrangements in nonpermanent spaces or non-bed sites. Additional tools such as long-lasting hammock nets could be suitable as they are in line with current practices

Report on the current research programme “Biomedicine in Africa” - DOI: 10.3395/reciis.v2i1.126en

This research programme examines how the science and practice of biomedicine is shaped through its engagements in various African contexts. We regard biomedicine as a circulating set of technologies, practices, and ideas that – as a by-product of prevention and healing – links individual bodies to the political order. We take Africa to be central for understanding global shifts in the making of bodies and subjectivities as well as of social, political, and juridical forms of governance exactly because the continent is so marginalised in the global political economy and thus represents a site of intense conflict and experimentation. Sociologists and anthropologists of medicine have begun to scrutinise biomedicine through studies of laboratory and clinical life in the West. There has, however, been little scrutiny of biomedicine on the more difficult terrains of non-Western countries where humanitarian crises and complex emergencies involving refugees, wars, and epidemics are common. Our programme, which focuses regionally on Ivory Coast, Kenya, Tanzania, Angola, and South Africa, aims to fill this gap

Relatório sobre o Programa de Pesquisa “Biomedicina na África

This research programme examines how the science and practice of biomedicine is shaped through its engagements in various African contexts. We regard biomedicine as a circulating set of technologies, practices, and ideas that – as a by-product of prevention and healing – links individual bodies to the political order. We take Africa to be central for understanding global shifts in the making of bodies and subjectivities as well as of social, political, and juridical forms of governance exactly because the continent is so marginalised in the global political economy and thus represents a site of intense conflict and experimentation. Sociologists and anthropologists of medicine have begun to scrutinise biomedicine through studies of laboratory and clinical life in the West. There has, however, been little scrutiny of biomedicine on the more difficult terrains of non-Western countries where humanitarian crises and complex emergencies involving refugees, wars, and epidemics are common. Our programme, which focuses regionally on Ivory Coast, Kenya, Tanzania, Angola, and South Africa, aims to fill this gap.Este programa de pesquisa examina como a ciência e a prática da biomedicina são modeladas através de seus envolvimentos em vários contextos africanos. Consideramos a biomedicina como um conjunto circulante de tecnologias, práticas, e idéias que – como um subproduto de prevenção e tratamento – une os órgãos individuais à ordem polí- tica. Consideramos a África como um ponto central para entendermos as mudanças globais na criação de órgãos e subjetividades, bem como formas sociais, políticas e jurídicas de governança, exatamente porque o continente é tão marginalizado na economia política global e, assim, representa um local de intenso conflito e experimentação. Os sociólogos e antropólogos da medicina começaram a examinar a biomedicina através de estudos laboratoriais e da vida clínica na região Oeste. Houve pouco escrutínio da biomedicina nas áreas mais difíceis de países não-ocidentais onde crises humanitárias e emergências complexas envolvendo refugiados, guerras e epidemias são comuns. O nosso programa, enfocado regionalmente em Costa do Marfim, Quênia, Tanzânia, Angola e África do Sul tem por objetivo o preenchimento desta lacuna

Report on the current research programme “Biomedicine in Africa”

Made available in DSpace on 2017-01-30T11:45:34Z (GMT). No. of bitstreams: 2 license.txt: 1748 bytes, checksum: 8a4605be74aa9ea9d79846c1fba20a33 (MD5) 18.pdf: 246883 bytes, checksum: 44b1f9816aeb148e7f074543f6ea7257 (MD5) Previous issue date: 2008Research Group on “Law, Organization, Science & Technology” MPI for Social Anthropology. Halle, Alemanha.Research Group on “Law, Organization, Science & Technology” MPI for Social Anthropology. Halle, Alemanha.Este programa de pesquisa examina como a ciência e a prática da biomedicina são modeladas através de seus envolvimentos em vários contextos africanos. Consideramos a biomedicina como um conjunto circulante de tecnologias, práticas, e idéias que – como um subproduto de prevenção e tratamento – une os órgãos individuais à ordem política. Consideramos a África como um ponto central para entendermos as mudanças globais na criação de órgãos e subjetividades, bem como formas sociais, políticas e jurídicas de governança, exatamente porque o continente é tão marginalizado na economia política global e, assim, representa um local de intenso conflito e experimentação. Os sociólogos e antropólogos da medicina começaram a examinar a biomedicina através de estudos laboratoriais e da vida clínica na região Oeste. Houve pouco escrutínio da biomedicina nas áreas mais difíceis de países não-ocidentais onde crises humanitárias e emergências complexas envolvendo refugiados, guerras e epidemias são comuns. O nosso programa, enfocado regionalmente em Costa do Marfim, Quênia, Tanzânia, Angola e África do Sul tem por objetivo o preenchimento desta lacuna.This research programme examines how the science and practice of biomedicine is shaped through its engagements in various African contexts. We regard biomedicine as a circulating set of technologies, practices, and ideas that – as a by-product of prevention and healing – links individual bodies to the political order. We take Africa to be central for understanding global shifts in the making of bodies and subjectivities as well as of social, political, and juridical forms of governance exactly because the continent is so marginalised in the global political economy and thus represents a site of intense conflict and experimentation. Sociologists and anthropologists of medicine have begun to scrutinise biomedicine through studies of laboratory and clinical life in the West. There has, however, been little scrutiny of biomedicine on the more difficult terrains of non-Western countries where humanitarian crises and complex emergencies involving refugees, wars, and epidemics are common. Our programme, which focuses regionally on Ivory Coast, Kenya, Tanzania, Angola, and South Africa, aims to fill this gap

Tuberculosis patients and resilience: A visual ethnographic health study in Khayelitsha, Cape Town

Khayelitsha, one of the biggest and poorest townships in South Africa, has a well-resourced tuberculosis (TB) programme with an interdisciplinary approach addressing the medical, social, and economic forces impacting TB care. Nevertheless, the area remains burdened with one of the highest TB rates in the world. Using a resilience-based approach, we conducted a critical ethnographic study to develop deeper insights into the complexities of patients' experiences with TB and care. Between October 2014 and March 2015, we approached 30 TB patients, 10 health-care workers, 10 pastors, and 10 traditional healers, using participant observation, in-depth interviews, and focus group discussions. In addition, seven key informants were filmed on a daily basis by the lead researcher. The work reported here (both text and short videos) illustrates the various manifestations of resilience that patients demonstrated and how these impacted on decisions involving treatment seeking and adherence. We have synthesized the data into the following inter-related themes: TB aetiologies and treatment; the embodied experience of TB treatment; alcohol consumption; financial constraints; and support and stigma. The findings from this research highlight patients' strategies for adapting to adversities, such as pausing TB treatment when lacking food to avoid becoming psychotic, consuming alcohol to better cope, obtaining social grants, and avoiding stigmatizing attitudes. Some manifestations of resilience may interact and, inadvertently, undermine TB patients' health. Other aspects of resilience, such as strong community ties, elicited long-term health benefits. TB programs would benefit from a resilience-building approach that builds on pre-existing strengths and vulnerabilities of TB patients and their communities. With the use of short videos, we provided patients with an alternative path for expressing their experiences, which we hope will support synergies between patients, researchers, and policy-makers for improved TB programmes