Nora Engel
Maastricht University, Health, Ethics & Society, Faculty Member
- Qualitative Health Research, Health Reforms And Health Politics, Sociology of Health, Global Health, Health Policy, Development Studies, and 10 moreSociology of Technology, Anthropology of Technology, Infectious Diseases, Tuberculosis and Infectious Disease, Technology and Society, STS (Anthropology), Public Policy, Innovation Studies, Sociology of Diagnosis, and Medical Anthropologyedit
Additional file 1: FGD discussion guides.
add information_focus group guide: Moderator guides for focus group discussions with medical officers, nurses, doctors; community health workers and patients. (DOC 56Â kb)
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Point-of-care (POC) tests have the potential to improve the management of infectious diseases, especially in resource-limited settings where health care infra-structure is weak, and access to quality and timely medical care is a challenge... more
Point-of-care (POC) tests have the potential to improve the management of infectious diseases, especially in resource-limited settings where health care infra-structure is weak, and access to quality and timely medical care is a challenge [1,2]. These tests offer rapid results, allowing for timely initiation of appropriate therapy, and/or facilitation of linkages to care and referral. Most importantly, POC tests can be simple enough to be used at the primary care level and in remote settings with no laboratory infrastructure. POC tests can potentially empower patients to self-test in the privacy of their homes, especially for stigmatized diseases such as HIV [3]. In fact, home-based, over-the-counter HIV testing was approved in July
Chronic non-communicable diseases (NCDs), such as diabetes and cardiovascular diseases, have reached epidemic proportions worldwide. Health systems, especially those in low- and middle-income countries, such as India, struggle to deliver... more
Chronic non-communicable diseases (NCDs), such as diabetes and cardiovascular diseases, have reached epidemic proportions worldwide. Health systems, especially those in low- and middle-income countries, such as India, struggle to deliver quality chronic care. A reorganization of healthcare service delivery is needed to strengthen care for chronic conditions. In this study, we evaluated the implementation of a package of tailored interventions to reorganize care, which were identified following a detailed analysis of gaps in delivering quality NCD care at the primary care level in India. Interventions included a redesign of the workflow at primary care clinics, a redistribution of tasks, the introduction of patient information records and the involvement of community health workers in the follow-up of patients with NCDs. An experimental case study design was chosen to study the implementation of the quality improvement measures. Three public primary care facilities in rural South Ind...
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In contrast to the millennium development goals (MDGs), the sustainable development goals (SDGs) entail a universal and equitable approach to global health by defining health problems as multidimensional issues. SDG3, which aims to... more
In contrast to the millennium development goals (MDGs), the sustainable development goals (SDGs) entail a universal and equitable approach to global health by defining health problems as multidimensional issues. SDG3, which aims to “ensure healthy lives and promote well‐being for all at all ages,” targets a broad range of communicable diseases, mother and child health, noncommunicable diseases, mental health, substance abuse, traffic accidents, and health threats from hazardous environmental pollution, and to that end suggests supporting research and development of appropriate technology. This chapter will review how science, technology and innovation (STI) are conceptualized in the SDGs and how they are assumed to tackle health inequalities. Inspired by insights from science and technology studies, and using examples from the authors’ ethnographic studies on development and implementation of point-of-care diagnostics and development of cookstoves, it will discuss what the challenge...
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Feasibility and acceptability research for HIV self-testing (HIVST) often emphasises the importance of good test conduct and correct test interpretation for knowing one’s HIV result while overlooking the ways in which different... more
Feasibility and acceptability research for HIV self-testing (HIVST) often emphasises the importance of good test conduct and correct test interpretation for knowing one’s HIV result while overlooking the ways in which different uncertainties and meanings emerge around testing. Using empirical examples from a quantitative study assessing an app-based strategy in Cape Town, South Africa, this research article explores the practice of HIVST and how people deal with uncertainties while using the app in question, named ‘HIVSmart!’. We use the concept of ‘living under’ to explore the practices of HIV testing for those who fit the definition of being ‘at risk’ of HIV (note that an individual’s HIV status must be unknown in order for them to fit this definition) and to understand how an app-based HIVST strategy fits within these practices. We show how the app and oral self-test—as well as knowledge around HIV risk behaviours, comparisons between different testing methods, and the guidance a...
IntroductionPatient rights are “those rights that are attributed to a person seeking healthcare”. Patient rights have implications for quality of healthcare and acts as a key accountability tool. It can galvanise structural improvements... more
IntroductionPatient rights are “those rights that are attributed to a person seeking healthcare”. Patient rights have implications for quality of healthcare and acts as a key accountability tool. It can galvanise structural improvements in the health system and reinforces ethical healthcare. States are duty bound to respect, protect and promote patient rights. The rhetoric on patient rights is burgeoning across the globe. With changing modes of governance arrangements, a number of state and non-state actors and institutions at various levels play a role in the design and implementation of (patient rights) policies. However, there is limited understanding on the multilevel institutional mechanisms for patient rights implementation in health facilities. We attempt to fill this gap by analysing the available scholarship on patient rights through a critical interpretive synthesis approach in a systematic scoping review.MethodsThe review question is ‘how do the multilevel actors, institu...
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Background: The radical cure of Plasmodium vivax requires treatment with an 8-aminoquinoline drug, such as primaquine and tafenoquine, to clear the liver of parasites which can reactivate to cause relapsing infections. Safe treatment... more
Background: The radical cure of Plasmodium vivax requires treatment with an 8-aminoquinoline drug, such as primaquine and tafenoquine, to clear the liver of parasites which can reactivate to cause relapsing infections. Safe treatment regimens require prior screening of patients for glucose-6-phosphate dehydrogenase (G6PD) deficiency to avoid potential life-threatening drug induced hemolysis. Testing is rarely available in malaria endemic countries, but will be needed to support routine use of radical cure. This study investigates end-user perspectives in Bangladesh on the introduction of a quantitative G6PD test (SD Biosensor STANDARD™ G6PD analyser) to support malaria elimination.Methods: The perspectives of users on the SD Biosensor test were analysed using semi-structured interviews and focus group discussions with health care providers and malaria programme officers in Bangladesh. Key emerging themes regarding the feasibility of introducing this test into routine practice, inclu...
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Pilot (feasibility) studies form a vast majority of diagnostic studies with point-of-care technologies but often lack use of clear measures/metrics and a consistent framework for reporting and evaluation. To fill this gap, we... more
Pilot (feasibility) studies form a vast majority of diagnostic studies with point-of-care technologies but often lack use of clear measures/metrics and a consistent framework for reporting and evaluation. To fill this gap, we systematically reviewed data to () catalog feasibility measures/metrics and () propose a framework. For the period January 2000 to March 2014, 2 reviewers searched 4 databases (MEDLINE, EMBASE, CINAHL, Scopus), retrieved 1441 citations, and abstracted data from 81 studies. We observed 2 major categories of measures, that is, implementation centered and patient centered, and 4 subcategories of measures, that is, feasibility, acceptability, preference, and patient experience. We defined and delineated metrics and measures for a feasibility framework. We documented impact measures for a comparison. We observed heterogeneity in reporting of metrics as well as misclassification and misuse of metrics within measures. Although we observed poorly defined measures and m...
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Research Interests: Nursing, Focus Groups, Health Care, Human Resources, Medicine, and 15 moreHIV, India, Malawi, Community Health Workers, Library and Information Studies, Humans, Point of Care, Feasibility, Implementation, Acceptability, Hiv Aids, Point of Care Testing, Health Personnel, Interviews as topic, and HIV infections
Point-of-care testing promises to cut diagnostic and treatment delays by ensuring patients receive a management decision based on a diagnostic test within one encounter with a provider. Adding to STS work on diagnostics and the sociology... more
Point-of-care testing promises to cut diagnostic and treatment delays by ensuring patients receive a management decision based on a diagnostic test within one encounter with a provider. Adding to STS work on diagnostics and the sociology of diagnosis, this paper examines the work involved in enacting point-of-care testing, how technology features and the embedded assumptions regarding patients. Using focus group discussions with providers and patients in India, the results reveal overlaps, detours and frictions along diagnostic pathways. Diagnosing at point of care requires coordination work by providers and patients and alignment of diagnostic ensembles in which bodies, tools, knowledge, infrastructure, social relations and testing sites mutually configure each other. Patients do not always leave the point of care with one disease or diagnosis. In the process, they are both turned into objects as well as powerful actors. Contributions to STS theory and implications for global healt...
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Clinical research involving humans introduces multiple ethical controversies, including the one surrounding payments provided to research participants. Providing monetary payments to clinical research participants is a widely used... more
Clinical research involving humans introduces multiple ethical controversies, including the one surrounding payments provided to research participants. Providing monetary payments to clinical research participants is a widely used practice, but it continuously raises debates. Concerns have been expressed that payments can influence decisions of potential research participants regarding enrollment in a study, possibly violating voluntariness of consent, “blinding” participants to the risks involved, and leading to undue inducement (McNeill 1997; Lemmens and Elliott 1999; Ballantyne 2008). It has also been hypothesized that by paying participants, investigators may disproportionally attract economically disadvantaged people who come to bear an unfair proportion of the burdens while society at large receives the benefits (McGregor 2005; Phillips 2011; McNeill 1997). Paying participants can also lead to commercialization of participation in clinical research (Chambers 2001; King 2001). According to a long prevailing view, only payments that are intended to reimburse research participants for losses incurred in connection with participation in research, such as travel costs, are considered to be ethically nonproblematic (Wilkinson and Moore 1997).
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Global Health is increasingly becoming a political, professional, and academic field of its own. New players and cross-border collaborations have emerged to solve some of the world's most daunting public health problems, resulting... more
Global Health is increasingly becoming a political, professional, and academic field of its own. New players and cross-border collaborations have emerged to solve some of the world's most daunting public health problems, resulting in a multitude of global health care innovations across different institutional and cultural settings. With these innovations often comes the underlying assumption that we can find universal solutions if only we can overcome the challenges posed by different contexts. Making Global Health Care Innovations Work is the first book that studies this tension between universal and localized health care innovations and provides a diverse account on how global health care innovations are and can be connected to local practices. Using approaches from science and technology studies (STS), innovation studies, development studies, and public health, the book contributes to the discussion on standardization and localization of global health innovations.
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Research Interests: Sociology, Anthropology, Bioethics, Research Design, Clinical Trials, and 11 moreHealth Care, Clinical Trial, International Cooperation, Medicine, Russia, Social Science & Medicine, Humans, Alternative Medicine, Public health systems and services research, Cardiovascular Diseases, and Clinical Trials as Topic
Point-of-care (POC) testing in communities, home settings and primary healthcare centers plays an important role in cutting delays in HIV diagnosis and in the uptake of voluntary testing and counseling. Qualitative research methods have... more
Point-of-care (POC) testing in communities, home settings and primary healthcare centers plays an important role in cutting delays in HIV diagnosis and in the uptake of voluntary testing and counseling. Qualitative research methods have important potential to overcome the current challenges in expanding HIV POC testing programs and strategies, by examining the diagnostic processes, complex inter-relationships and patterns involved in making POC diagnostics work in real-world settings. This article reviews existing qualitative studies on POC testing strategies and programs for HIV. Qualitative research on POC diagnostics around the uptake of POC tests, the actual diagnostic and testing processes involved, the influence of POC tests on clinical decision-making, communication of decisions and decisions exercised by patients are limited. Equally limited are studies that explore adaptation of POC programs to various socio-cultural contexts. More qualitative research is needed to inform test developers, funders and policymakers.
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Successful point-of-care (POC) testing (completion of test-and-treat cycle in one patient encounter) has immense potential to reduce diagnostic and treatment delays, and improve patient and public health outcomes. We explored what tests... more
Successful point-of-care (POC) testing (completion of test-and-treat cycle in one patient encounter) has immense potential to reduce diagnostic and treatment delays, and improve patient and public health outcomes. We explored what tests are done and how in public/private, rural/urban hospitals and clinics in South Africa and whether they can ensure successful POC testing. This qualitative research study examined POC testing across major diseases in Cape Town, Durban and Eastern Cape. We conducted 101 semi-structured interviews and seven focus group discussions with doctors, nurses, community health workers, patients, laboratory technicians, policymakers, hospital managers and diagnostic manufacturers. In South Africa, diagnostics are characterised by a centralised system. Most tests conducted on the spot can be made to work successfully as POC tests. The majority of public/private clinics and smaller hospitals send samples via couriers to centralised laboratories and retrieve result...
Research Interests: Focus Groups, Qualitative Research, Medicine, Hospitals, Humans, and 15 moreHypertension, Diabetes mellitus, Qualitative, Infection, Compounding, Accuracy, Feasibility, Implementation, Acceptability, Province, Point of Care Testing, Point of Care Diagnostics, Delayed Diagnosis, Health Personnel, and Interviews as topic
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Research Interests: Applied Ethics, Bioethics, Clinical Trials, Culture, International Cooperation, and 15 moreMedicine, Community Based Participatory Research, Humans, Female, Male, Exploratory Research, Medical Research, Beneficence, Adult, Benefit Sharing, Ethics Research, Clinical Trials as Topic, cultural characteristics, Interviews as topic, and HIV infections
Among the challenges for tuberculosis control is the emergence of multi-drug resistance, which has led to the search for new diagnostic solutions worldwide. The focus of this article is the interplay between innovation of diagnostics for... more
Among the challenges for tuberculosis control is the emergence of multi-drug resistance, which has led to the search for new diagnostic solutions worldwide. The focus of this article is the interplay between innovation of diagnostics for multi-drug resistant tuberculosis in India and control through standardization of operational and technical processes. Innovation in diagnostics is closely related to processes of standardization. As a form of social ordering, standardization not only controls patients, bacteria, artefacts, health-care staff and medical providers, but also the diagnostic process as such. On the basis of qualitative fieldwork, I analyse the innovative efforts of a demonstration project for a new test by an international NGO and the development of tests by smaller players. The main argument is that a balance is needed between the extremes of controlling the diagnostic process through standardization in such a way that it becomes exclusive for particular local settings or expertise, and innovating a diagnostic test without standardizing operational processes, which is not programmatically feasible. These negotiations between innovation and control can be found in situated assessments, yet require flexibility in standardization.
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Interview guides. This document includes guides that were used to semi structure the in-depth interviews with doctors and patients. (DOCX 21 kb)
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Engel Treatment of Tuberculosis (TB) and multi-drug resistant Tuberculosis (MDR-TB) is a public good, due to the risk of transmission of infectious strains and the potential amplification of drug-resistance. The provision of this public... more
Engel Treatment of Tuberculosis (TB) and multi-drug resistant Tuberculosis (MDR-TB) is a public good, due to the risk of transmission of infectious strains and the potential amplification of drug-resistance. The provision of this public good by government programmes has to bear a tension between standardized guidelines within programmatic constraints and local adaptation responding to needs for individual care. This tension is central to Tuberculosis control and is rendered more urgent for the prolonged and complicated MDR-TB treatment. This paper focuses on the first treatment sites for MDR-TB of the public TB programme in India. My fieldwork shows that actors here struggle with the interplay between local adaptation and standardization in service delivery. The literature casts this relationship often in terms of ideological opposites and thus actors would have to make normative choices for one over the other. My results show that there is indeed a risk of being caught in dilemma-t...
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To be effective, healthcare technologies should be attuned to particular contexts of use. This article examines how such attuning is articulated in global innovation practices for tuberculosis and HIV diagnostics, and to what effect. It... more
To be effective, healthcare technologies should be attuned to particular contexts of use. This article examines how such attuning is articulated in global innovation practices for tuberculosis and HIV diagnostics, and to what effect. It examines the development of point-of-care (POC) diagnostics – promised to be designed for users outside laboratories or in resource constrained settings – to study what developers and implementers do to align diagnostic technologies to the POC. Fieldwork among global health actors involved in diagnostic development, including manufacturers, donors, industry consultants, international organizations, policymakers, regulators and researchers, is combined with fieldwork among users of diagnostics in India, including decision-makers, NGOs, program officers, laboratory technicians and nurses. The article adds to STS’s theory of alignment and user interaction, where the setting and user to which developers and implementers of global health diagnostics align...
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The core objective of any point-of-care (POC) testing program is to ensure that testing will result in an actionable management decision (e.g. referral, confirmatory test, treatment), within the same clinical encounter (e.g. POC... more
The core objective of any point-of-care (POC) testing program is to ensure that testing will result in an actionable management decision (e.g. referral, confirmatory test, treatment), within the same clinical encounter (e.g. POC continuum). This can but does not have to involve rapid tests. Most studies on POC testing focus on one specific test and disease in a particular healthcare setting. This paper describes the actors, technologies and practices involved in diagnosing major diseases in five Indian settings - the home, community, clinics, peripheral laboratories and hospitals. The aim was to understand how tests are used and fit into the health system and with what implications for the POC continuum. The paper reports on a qualitative study including 78 semi-structured interviews and 13 focus group discussions with doctors, nurses, patients, lab technicians, program officers and informal providers, conducted between January and June 2013 in rural and urban Karnataka, South India...
Research Interests: Health Informatics, Focus Groups, Health Care, Qualitative Research, Public Health, and 15 moreHealth Administration, Medicine, India, Library and Information Studies, Humans, Female, Male, Focus Group, Adult, Public health systems and services research, Healthcare System in India, Point of Care Testing, Point of Care Diagnostics, Delayed Diagnosis, and Delivery of Health Care
Research Interests: Nursing, Health Care, Qualitative Research, Public Health, Medicine, and 15 moreMultidisciplinary, India, Humans, Female, Male, Focus Group, Exploratory Research, PLoS one, Opportunities, Hiv Aids, Patient Centeredness, Pulmonary Tuberculosis, Point of Care Testing, Delivery of Health Care, and Rural Population
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Research Interests: Economics, Politics, Tuberculosis and Infectious Disease, Public Health, Health Policy, and 10 moreMedicine, India, Humans, Mycobacterium tuberculosis, Health Policy and Planning, Public Administration and Policy, Public health systems and services research, Pulmonary Tuberculosis, Public Problems, and Public Policy
Tuberculosis or tb is a very serious problem in India and worldwide, and generally lacks attention in the public domain. Scientists, medical doctors, health staff and community workers make heroic efforts but the innovative potential of... more
Tuberculosis or tb is a very serious problem in India and worldwide, and generally lacks attention in the public domain. Scientists, medical doctors, health staff and community workers make heroic efforts but the innovative potential of India remains underused. This ...
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United Nations University - Maastricht Economic and social Research and training centre on Innovation and Technology Keizer Karelplein 19, 6211 TC Maastricht, The Netherlands Tel: (31) (43) 388 4400, Fax: (31) (43) 388 4499, e-mail:... more
United Nations University - Maastricht Economic and social Research and training centre on Innovation and Technology Keizer Karelplein 19, 6211 TC Maastricht, The Netherlands Tel: (31) (43) 388 4400, Fax: (31) (43) 388 4499, e-mail: info@merit.unu.edu, URL: http://www. ...
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Introduction Implementation data for digital unsupervised HIV self-testing (HIVST) are sparse. We evaluated the impact of an app-based, personalised, oral HIVST program offered by healthcare workers in Western Cape, South Africa. Methods... more
Introduction Implementation data for digital unsupervised HIV self-testing (HIVST) are sparse. We evaluated the impact of an app-based, personalised, oral HIVST program offered by healthcare workers in Western Cape, South Africa. Methods In a quasirandomised study (n=3095), we recruited consenting adults with undiagnosed HIV infection from township clinics. To the HIVST arm participants (n=1535), we offered a choice of an offsite (home, office or kiosk based), unsupervised digital HIVST program (n=962), or an onsite, clinic-based, supervised digital HIVST program (n=573) with 24/7 linkages services. With propensity score analyses, we compared outcomes (ie, linkages, new HIV infections and test referrals) with conventional HIV testing (ConvHT) arm participants (n=1560), recruited randomly from geographically separated clinics. Results In both arms, participants were young (HIVST vs ConvHT) (mean age: 28.2 years vs 29.2 years), female (65.0% vs 76.0%) and had monthly income <3000 r...
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Point-of-care testing promises to cut diagnostic and treatment delays by ensuring patients receive a management decision based on a diagnostic test within one encounter with a provider. Adding to STS work on diagnostics and the sociology... more
Point-of-care testing promises to cut diagnostic and treatment delays by ensuring patients receive a management decision based on a diagnostic test within one encounter with a provider. Adding to STS work on diagnostics and the sociology of diagnosis, this paper examines the work involved in enacting point-of-care testing, how technology features and the embedded assumptions regarding patients. Using focus group discussions with providers and patients in India, the results reveal overlaps, detours and frictions along diagnostic pathways. Diagnosing at point of care requires coordination work by providers and patients and alignment of diagnostic ensembles in which bodies, tools, knowledge, infrastructure, social relations and testing sites mutually configure each other. Patients do not always leave the point of care with one disease or diagnosis. In the process, they are both turned into objects as well as powerful actors. Contributions to STS theory and implications for global health innovation practices are discussed.
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Sariola, S. Montgomery, C. M., Kingori, P., Sariola, S., & Engel, N. (2017). Guest editorial to special issue: Critique and Complicity: STS and Global Health. Science & Technology Studies, 30(3), 2-12.... more
Sariola, S. Montgomery, C. M., Kingori, P., Sariola, S., & Engel, N. (2017). Guest editorial to special issue: Critique and Complicity: STS and Global Health. Science & Technology Studies, 30(3), 2-12. doi:https://doi.org/10.23987/sts.65369
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Sariola, S., Engel, N., Kingori, P., & Montgomery, C. M. (2017). Guest editorial to special issue STS and Global Health: Coffee Time at the Conference : The Global Health Complex in Action to Tackle Antimicrobial Resistance. Science &... more
Sariola, S., Engel, N., Kingori, P., & Montgomery, C. M. (2017). Guest editorial to special issue STS and Global Health: Coffee Time at the Conference : The Global Health Complex in Action to Tackle Antimicrobial Resistance. Science & Technology Studies, 30(4), 2-7. doi:https://doi.org/10.23987/sts.66430