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Global health emergencies often lead to a proliferation of health-related research and resultant data, which is shared across borders to help control the outbreak of disease and support decision-making regarding public health interventions. However, efforts to share data can be hindered by diverse international ethical and legal frameworks. The frameworks aim to govern coordinated processing, sharing and transfer of health data across borders thus placing burdens on researchers who are willing or obligated to share data. In this paper, we investigate ethical values and legal principles that can be applied to ensure a more streamlined approach in the governance of cross-border health data sharing during global health emergencies. A scoping review approach was used to better understand emerging evidence about issues related to the ethical and legal governance of cross-border health data sharing. We first highlight the challenges of sharing health data across borders. We then discuss how the challenges might be overcome through the application of ethical values and legal principles that have been identified in literature. This is followed by a proposal for possible ways of streamlining the governance of health data sharing from ethical and legal perspectives in a bid to better prepare for future global health emergencies and promote the responsible sharing of health data. [ABSTRACT FROM AUTHOR]

Background: Reflecting global norms, South Africa is associated with high levels of cross-border and internal population mobility, yet migration-aware health system responses are lacking. Existing literature highlights three methodological challenges limiting the development of evidence-informed responses to migration and health: (1) lack of engagement with the process of migration; (2) exclusion of internal migrants; and (3) lack of methodologies that are able to capture 'real-time' data about health needs and healthcare seeking experiences over both time and place. In this paper, we reflect on a four-month pilot project which explored the use of WhatsApp Messenger - a popular mobile phone application used widely in sub-Saharan Africa - and assessed its feasibility as a research tool with migrant and mobile populations in order to inform a larger study that would address these challenges.Method: A four-month pilot was undertaken with eleven participants between October 2019 and January 2020. Using Survey Node, an online platform that allows for the automatic administration of surveys through WhatsApp, monthly surveys were administered. The GPS coordinates of participants were also obtained. Recruited through civil society partners in Gauteng, participants were over the age of 18, comfortable engaging in English, and owned WhatsApp compatible cell phones. Enrolment involved an administered survey and training participants in the study protocol. Participants received reimbursement for their travel costs and monthly cell phone data.Results: Out of a possible eighty eight survey and location responses, sixty one were received. In general, participants responded consistently to the monthly surveys and shared their location when prompted. Survey Node proved an efficient and effective way to administer surveys through WhatsApp. Location sharing via WhatsApp proved cumbersome and led to the development of a secure platform through which participants could share their location. Ethical concerns about data sharing over WhatsApp were addressed.Conclusions: The success of the pilot indicates that WhatsApp can be used as a tool for data collection with migrant and mobile populations, and has informed the finalisation of the main study. Key lessons learnt included the importance of research design and processes for participant enrolment, and ensuring that the ethical concerns associated with WhatsApp are addressed. [ABSTRACT FROM AUTHOR]

Qualitative research with close engagement in the field allows researchers and participants to build relationships and establish trust, enabling researchers to collect meaningful and sensitive information. Drawing on findings from a study conducted in an urban setting in South Africa, we discuss the challenges faced when interviewing pregnant women with HIV infection, retaining them in the study, and extending the study to include their partners. We discuss the dynamics of pregnancy and draw lessons from interviews concerned with personal, sensitive issues. The study on which we draw was conducted in Johannesburg, South Africa, and was nested in a larger prospective cohort study of women and their infants, which in turn was part of a case control study. Sensitive topics are difficult and complex, but to ignore these and stay in safe territory is to ignore some of the most pressing questions of our time. It is important that those who conduct interviews are well trained and able to engage empathetically with participants, and that some form of counselling is available for both participants and researchers. [ABSTRACT FROM AUTHOR]

Background: Progress in achieving maternal health goals and the rates of reductions in deaths from individual conditions have varied over time and across countries. Assessing whether research priorities in maternal health align with the main causes of mortality, and those factors responsible for inequitable health outcomes, such as health system performance, may help direct future research. The study thus investigated whether the research done in low- and middle-income countries (LMICs) matched the principal causes of maternal deaths in these settings.Methods: Systematic mapping was done of maternal health interventional research in LMICs from 2000 to 2012. Articles were included on health systems strengthening, health promotion; and on five tracer conditions (haemorrhage, hypertension, malaria, HIV and other sexually transmitted infections (STIs)). Following review of 35,078 titles and abstracts in duplicate, data were extracted from 2292 full-text publications.Results: Over time, the number of publications rose several-fold, especially in 2004-2007, and the range of methods used broadened considerably. More than half the studies were done in sub-Saharan Africa (55.4 %), mostly addressing HIV and malaria. This region had low numbers of publications per hypertension and haemorrhage deaths, though South Asia had even fewer. The proportion of studies set in East Asia Pacific dropped steadily over the period, and in Latin America from 2008 to 2012. By 2008-2012, 39.1 % of articles included health systems components and 30.2 % health promotion. Only 5.4 % of studies assessed maternal STI interventions, diminishing with time. More than a third of haemorrhage research included health systems or health promotion components, double that of HIV research.Conclusion: Several mismatches were noted between research publications, and the burden and causes of maternal deaths. This is especially true for South Asia; haemorrhage and hypertension in sub-Saharan Africa; and for STIs worldwide. The large rise in research outputs and range of methods employed indicates a major expansion in the number of researchers and their skills. This bodes well for maternal health if variations in research priorities across settings and topics are corrected. [ABSTRACT FROM AUTHOR]

Background: Mapping studies describe a broad body of literature, and differ from classical systematic reviews, which assess more narrowly-defined questions and evaluate the quality of the studies included in the review. While the steps involved in mapping studies have been described previously, a detailed qualitative account of the methodology could inform the design of future mapping studies. Objectives: Describe the perspectives of a large research team on the methods used and collaborative experiences in a study that mapped the literature published on maternal health interventions in low- and middle-income countries (2292 full text articles included, after screening 35,048 titles and abstracts in duplicate). Methods: Fifteen members of the mapping team, drawn from eight countries, provided their experiences and perspectives of the study in response to a list of questions and probes. The responses were collated and analysed thematically following a grounded theory approach. Results: The objectives of the mapping evolved over time, posing difficulties in ensuring a uniform understanding of the purpose of the mapping among the team members. Ambiguity of some study variables and modifications in data extraction codes were the main threats to the quality of data extraction. The desire for obtaining detailed information on a few topics needed to be weighed against the benefits of collecting more superficial data on a wider range of topics. Team members acquired skills in systematic review methodology and software, and a broad knowledge of maternal health literature. Participation in analysis and dissemination was lower than during the screening of articles for eligibility and data coding. Though all respondents believed the workload involved was high, study outputs were viewed as novel and important contributions to evidence. Overall, most believed there was a favourable balance between the amount of work done and the project's outputs.Conclusions: A large mapping of literature is feasible with a committed team aiming to build their research capacity, and with a limited, simplified set of data extraction codes. In the team's view, the balance between the time spent on the review, and the outputs and skills acquired was favourable. Assessments of the value of a mapping need, however, to take into account the limitations inherent in such exercises, especially the exclusion of grey literature and of assessments of the quality of the studies identified. [ABSTRACT FROM AUTHOR]

Background: Researchers in low- and middle-income countries (LMICs) are under-represented in scientific literature. Mapping of authorship of articles can provide an assessment of data ownership and research capacity in LMICs over time and identify variations between different settings.Methods: Systematic mapping of maternal health interventional research in LMICs from 2000 to 2012, comparing country of study and of affiliation of first authors. Studies on health systems or promotion; community-based activities; and haemorrhage, hypertension, HIV/STIs and malaria were included. Following review of 35,078 titles and abstracts, 2292 full-text publications were included. Data ownership was measured by the proportion of articles with an LMIC lead author (author affiliated with an LMIC institution).Results: The total number of papers led by an LMIC author rose from 45.0/year in 2000-2003 to 98.0/year in 2004-2007, but increased only slightly thereafter to 113.1/year in 2008-2012. In the same periods, the proportion of papers led by a local author was 58.4 %, 60.8 % and 60.1 %, respectively. Data ownership varies markedly between countries. A quarter of countries led more than 75 % of their research; while in 10 countries, under 25 % of publications had a local first author. Researchers at LMIC institutions led 56.6 % (1297) of all papers, but only 26.8 % of systematic reviews (65/243), 29.9 % of modelling studies (44/147), and 33.2 % of articles in journals with an Impact Factor ≥5 (61/184). Sub-Saharan Africa authors led 54.2 % (538/993) of studies in the region, while 73.4 % did in Latin America and the Caribbean (223/304). Authors affiliated with United States (561) and United Kingdom (207) institutions together account for a third of publications. Around two thirds of USAID and European Union funded studies had high-income country leads, twice as many as that of Wellcome Trust and Rockefeller Foundation.Conclusions: There are marked gaps in data ownership and these have not diminished over time. Increased locally-led publications, however, does suggest a growing capacity in LMIC institutions to analyse and articulate research findings. Differences in author attribution between funders might signal important variations in funders' expectations of authorship and discrepancies in how funders understand collaboration. More stringent authorship oversight and reconsideration of authorship guidelines could facilitate growth in LMIC leadership. Left unaddressed, deficiencies in research ownership will continue to hinder alignment between the research undertaken and knowledge needs of LMICs. [ABSTRACT FROM AUTHOR]

Background: Pregnancy is life changing, making great demands on women to adapt physically, psychologically, and socially. Social relationships and the support that flow from these provide a critical role in managing health problems in pregnancy. Isolation and lack of care, in contrast, may lead women to experience increased distress during this time. Objective: This study aimed to explore South African women's perception and experience of care and support in pregnancy. Methods: A life history approach was employed to explore women’s experiences of pregnancy and sexual behaviour, with each participant encouraged to narrate important life events from her own perspective. We drew on narrative interviews with 15 pregnant women, conducted between July and October 2015, in which we explored questions regarding pregnancy planning and the provision and receipt of care. A thematic approach was employed to code and analyse the data. Results: Themes that emerged from the interviews showed that participants gained a sense of stability in their lives when they had support in their pregnancy, especially when dealing with challenging situations. This support came variously from family, friends, and social networks. Overall, those participants who mentioned the most support, and its diversity across different groups, reported a better experience of pregnancy. Conclusions: Women emphasised the importance of social and emotional support in pregnancy. Understanding women’s experiences can assist in making pregnancy less overwhelming, and can add to a woman’s ability to deal with different challenges before and after the arrival of the new baby. [ABSTRACT FROM PUBLISHER]

Background: Mapping studies describe a broad body of literature, and differ from classical systematic reviews, which assess more narrowly-defined questions and evaluate the quality of the studies included in the review. While the steps involved in mapping studies have been described previously, a detailed qualitative account of the methodology could inform the design of future mapping studies.Objectives: Describe the perspectives of a large research team on the methods used and collaborative experiences in a study that mapped the literature published on maternal health interventions in low- and middle-income countries (2292 full text articles included, after screening 35,048 titles and abstracts in duplicate).Methods: Fifteen members of the mapping team, drawn from eight countries, provided their experiences and perspectives of the study in response to a list of questions and probes. The responses were collated and analysed thematically following a grounded theory approach.Results: The objectives of the mapping evolved over time, posing difficulties in ensuring a uniform understanding of the purpose of the mapping among the team members. Ambiguity of some study variables and modifications in data extraction codes were the main threats to the quality of data extraction. The desire for obtaining detailed information on a few topics needed to be weighed against the benefits of collecting more superficial data on a wider range of topics. Team members acquired skills in systematic review methodology and software, and a broad knowledge of maternal health literature. Participation in analysis and dissemination was lower than during the screening of articles for eligibility and data coding. Though all respondents believed the workload involved was high, study outputs were viewed as novel and important contributions to evidence. Overall, most believed there was a favourable balance between the amount of work done and the project's outputs.Conclusions: A large mapping of literature is feasible with a committed team aiming to build their research capacity, and with a limited, simplified set of data extraction codes. In the team's view, the balance between the time spent on the review, and the outputs and skills acquired was favourable. Assessments of the value of a mapping need, however, to take into account the limitations inherent in such exercises, especially the exclusion of grey literature and of assessments of the quality of the studies identified. [ABSTRACT FROM AUTHOR]

Community health workers (CHWs) are an integral resource in many health systems, particularly in resource-poor settings. Their identities – 'who' they are – play an important role in their hiring, training, and retention. We explore the perceptions, experiences, and identities of CHWs as they adopt a CHW role in rural South Africa, using 'role identity theory'. From April to December 2010, we conducted 18 semi-structured interviews with CHWs volunteering in non-governmental home-based care (HBC) organisations in one rural sub-district in South Africa. The role identity theory framework was used to understand the work of CHWs within their communities, addressing themes, such as entry into, and nature of, caring roles, organisational support, state resourcing, and community acceptability. A thematic content analysis was used to analyse the collected data. The study found that CHWs usually begin their 'caring work' before they formally join HBC organisations, by caring for children, neighbours, mothers, fathers, friends, and the community in some way. CHWs felt that becoming a health worker provided an elevated status within the community, but that it often led community members to believe they were able to control resources. The key role identities assumed by CHWs, as they sought to meet patients' and their own needs, were a complex mix of community 'insider', 'outsider', and 'broker'. Each of these role identities served as a unique way to position, from the CHW's perspective, themselves and the community, given the diversity of needs and expectations. These role identities reveal the tensions CHWs face as 'insider' members of the community and yet at times being treated as 'outsiders', who might be regarded with suspicion, and at the same time, appreciated for the resources that they might possess. Understanding role identities, and how best to support them, may contribute to strategies of retention and sustainability of CHW programmes, as their formalisation in different contexts continues to grow. [ABSTRACT FROM AUTHOR]