The challenges of big data in low- and middle-income countries: from paper to petabytes

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Generation of digital data has expanded exponentially over the last decade, inspiring visions of data-driven healthcare and precision medicine. But the promise of big data is tempered by today’s reality in low resource settings: weak health systems and limited governance structures complicate its application. Many of the countries in greatest need continue to struggle to collect vital statistics on births and deaths, with epidemiological data of variable reliability typically coming from only small, sentinel sites. However, with the falling cost of aggregating and coordinating resources and services electronically, big data stands to deliver disproportionately large benefits to low- and middle-income countries (LMICs). Effective targeting of interventions is increasingly important when the availability of resources is limited.

The collection of individual level information – a prerequisite for big data – is fraught with ethical, regulatory and procedural challenges. Of widespread concern is the risk of breach of privacy, and, as a result, the thought of digitised and centralised repositories of personal records instils fear in many. This concern is further amplified when information is about individuals in vulnerable populations and communities. Even very basic health data – ethnicity, reproductive health history, sexually transmitted infections, diseases with a genetic basis, or risk exposures for disease – has the potential for misuse, leading to discrimination, personal danger or death. The risk of accidental or intentional breaches of data security may be increased with limited literacy, high corruption, or rapid technology transition. In many LMIC settings, legislation supporting the privacy and security of information is frequently underdeveloped and rarely enforced. Robust data sharing guidelines between LMIC stakeholders are often lacking, hampering big data solutions and compromising those in play.

The persistent tension between disease-specific (‘vertical’) programs and health-system (‘horizontal’) focused approaches remains unresolved. Big data arguably fits best with a horizontal approach, potentially improving data for a breadth of diseases to support the new Sustainable Development Goals. However, global health remains a siloed undertaking, often driven by disease specific interests. Ensuring inclusive data collection, dissemination and application is critical for maximizing big data’s potential.

Informed, reflective and resourced stewardship is critical to enable positive outcomes from health big data in LMICs. Unfortunately, the global health community has a patchy record of cohesive and inclusive governance of technical developments. Optimising the application of big data is much more than establishing confidentiality safeguards and minimum standards. A broad effort to establish enforceable interoperability standards is imperative to creating meaningful insight.

Big data’s mechanism of action is magnification; sheer size makes risks and benefits larger. This magnification is greater in low resource settings where big data are most needed and most vulnerable to fragmentation and misuse. Conscious and committed leadership, analysis and technical guidance are needed to minimise these risks. Complexities should not be underestimated; the shift from paper to petabytes in LMICs is a seismic change. Shepherding that transition provides an opportunity for global health institutions to demonstrate governance.

Image caption: “Logo for the Big Data for Health in Africa meeting, hosted by the African Partnership for Chronic Disease Research in Entebbe, Uganda on 3rd-4th November 2016. An initiative building capacity and expertise in Big Data and data science to ensure that African countries are able to capitalise on the scientific  technical, social and economic benefits of this new global industry”

Addressing the gender gap in global health leadership – via Global Health, Epidemiology and Genomics

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This post was written by Pascale Allotey andoriginally posted on the Global Health, Epidemiology and Genomics blog – read more at: http://cambridge.org/gheg-journal

In recognition of International Women’s Day 2016, GHEG is inviting submissions for a themed collection on Women in Global Health.

A core mission of global health is to achieve health equity for all people worldwide. Women, particularly in resource-limited settings, experience a disproportionate burden of disease and mortality due to inequities in access to basic health care, nutrition and education.(1) The imbalance in the health burden between genders is therefore a key focus, addressed by both the Millennium Development Goals and more recently, the Sustainable Development Goals.

However, despite this key goal to address gender inequities within the field of global health, women still occupy less than a quarter of global health leadership roles.(1) Ilona Kickbusch’s recent #WGH100 Twitter campaign to identify women leaders working at the forefront of global health, arose from a frustration with the lack of visibility of women in critical public spaces in the field.(2) Like other industries, the reasons for this imbalance include lack of opportunities, family commitments and lack of confidence. Whilst many institutions have attempted to address these issues, tackling the gender gap in leadership still requires a more proactive strategy.

This year’s theme for International Women’s day is Planet 50-50 by 2030: step it up for gender equality. The goal, spearheaded by UN Women, is to achieve gender equality in the next 15 years – by increasing investment in gender equality, striving for parity for women at all levels of decision-making, eliminating discriminatory legislation, and addressing social norms that perpetuate discrimination against women.(3)

The campaign for equality in leadership is important for reasons other than proportional representation. Research in several settings has shown that women in leadership positions are more likely than their male counterparts to invest in infrastructure and programmes that address women’s concerns.(1) Similarly, policies of women in leadership tend to be more responsive to the needs of women and children and recognise women’s responsibility for decision-making when it comes to the health of their families.(1, 2)

In an attempt to address and explore the issues surrounding gender and leadership in global health, GHEG will be publishing a themed collection on Women in Global Health. We invite submissions that explore, among other things, the current landscape, the potential reasons behind the current gender imbalance in global health roles, suggestions for practice and policy that can catalyse change, and descriptions of effective formal partnerships and campaigns on Women in Global Health. The deadline for this call is the 31st May 2016. To find out more visit: http://journals.cambridge.org/gheg/womenglobalhealth-cfp

 
References
1. Downs JA, Reif LK, Hokororo A, Fitzgerald DW. Increasing women in leadership in global health. Academic medicine : journal of the Association of American Medical Colleges. 2014;89(8):1103-7.
2. Devi S. Twitter campaign highlights top women in global health. Lancet (London, England). 2015;385(9965):318.
3. Press release: World leaders agree: We must close the gender gap [press release]. 2015.

Free Content about the Zika Virus Now Available

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Just 8 days after the public health emergency was declared, this content regarding the Zika virus has been written, reviewed, edited, and released as a freely available resource.

On February 1st, the World Health Organization declared a Public Health Emergency of International Concern related to clusters of microephaly cases in some areas affected by the Zika virus. Like the Ebola virus, there had been very little funding and research on Zika until the recent emergency and associated media and scientific attention – there is therefore a dearth of information and there is neither a vaccine nor prophylactic pharmacotherapy available to prevent Zika virus infection.

In response to concern over the effects of Zika virus infection in pregnant women, the medical publishing team at Cambridge University Press commissioned a brief summary of current evidence and recommendations. Just 8 days after the public health emergency was declared, this content has been written, reviewed, edited and released as a freely available resource. The content has been provided by Professor Bernard Gonik, Fann S. Srere Chair of Perinatal Medicine, Wayne State University School of Medicine.

Released in advance as a freely accessible public resource, this content is part of High-Risk Pregnancy: Management Options – a forthcoming updateable online product from Cambridge University Press. Like all of the content in High-Risk Pregnancy: Management Options, the Zika section will be regularly updated as new information arises.

Read about the Zika Virus Here

 

Announcing the publication of the first papers in GHEG

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We are delighted to announce the publication of the first papers in Global Health, Epidemiology and Genomics. As GHEG is fully Open Access, these papers, and all papers published in the future, are freely accessible online. Here we provide a brief summary of our first three publications.

 A forum for global population health, technological advances and implementation science
 Manjinder Sandhu

A welcome editorial by our Editor in Chief, marking the launch of Global Health, Epidemiology and Genomics. Dr Sandhu highlights the strengths of the broad interdisciplinary scope of the journal and its international editorial board and invites the global health community to engage and contribute to the journal so that it becomes a valuable, practical and informative resource.
Read the full article here

 

favicon Study Profile: The Durban Diabetes Study (DDS): a platform for chronic disease research
 Thomas Hird et al.

A study profile of The Durban Diabetes Study (DDS), an on-going population-based cross-sectional survey of an urban black population in Durban, South Africa. The DDS was established to investigate a broad range of lifestyle, medical and genetic factors and their association with diabetes. It provides a rich platform for investigating the distribution, interrelation and aetiology of other chronic diseases and their risk factors, which can be utilised for other research studies.
Read the full article here

 

Favicon long Capitalizing on Natural Experiments in Low- to Middle- Income Countries to Explore Epigenetic Contributions to Disease Risk in Migrant Populations
 J. Jaime Miranda et al.

 

A commentary on the value of epigenetics as a tool for understanding differential disease risk in migrant populations. The authors highlight the merit of exploring migrant chronic disease risk in low- to middle-income countries, particularly in the context of rural-to-urban migration, with increasing urbanisation in this setting.
Read the full article here
More articles will be published in the coming weeks, and you can be notified when new articles are published by signing up to content alerts here. Here’s a preview of what’s coming soon:

  • H3Africa Multi-Centre Study of the Prevalence and Environmental and Genetic Determinants of Type 2 Diabetes in Sub-Saharan Africa: Study Protocol
    Kenneth Ekoru et al.
  • Regulatory Developments in the Conduct of Clinical Trials in India
    Dhvani Mehta and Ranjit Roy Chaudhury

GHEG accepts original research articles, brief reports, structured reviews and commentaries as well as protocols, research resources and analysis. We are waiving the Article Processing Charge for all articles submitted to GHEG before the end of 2016. We invite contributions from a range of disciplines:
Epidemiology, Clinical trials, Genetics, Observational studies, Qualitative studies, Anthropological studies, Social science, Community intervention, Health systems, Health services, Population genetics, Population history.
For further information on the journal and how to submit please visit our website. Or if you wish to submit your manuscript directly please visit: http://mc.manuscriptcentral.com/gheg.

Global Health in 2015 – via Global Health, Epidemiology and Genomics

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This post was written by Anna Louise Barr andoriginally posted on the Global Health, Epidemiology and Genomics blog – read more at: http://journals.cambridge.org/gheg

A review of the year’s most notable global health news stories, events and research breakthroughs, and a look towards future challenges in 2016 and beyond.

This year has seen a number of milestones achieved in the fight against infectious diseases. For the first time, a malaria vaccine has been approved and recommended by the World Health Organization (WHO) for pilot implementation. If deemed safe and effective, the vaccine will be a positive step forward in the fight against malaria in Africa, where the specific species that the vaccine targets is most prevalent and is responsible for the deaths of 500,000 people annually. In June, Cuba became the first country in the world to eliminate mother-to-child transmission of HIV and syphilis. Furthermore, UNAIDS announced that, globally, the spread of HIV has been halted and reversed, with 15 million people now currently receiving antiretroviral therapy. These two achievements represent an important breakthrough in the prevention of HIV transmission and realising the goal of an AIDS-free generation. In September, WHO announced that Nigeria was no longer a polio-endemic country; just two countries (Pakistan and Afghanistan) have yet to stop polio transmission.

In West Africa, transmission of Ebola has ended in Sierra Leone, however, 19 months after the first case was reported, cases are still arising in Guinea and Liberia, and vigilance remains high in the region. Recent studies have detected the virus in semen, and other immune privileged sites, several months after infection, leading to some concern regarding possible sexual transmission of the virus. The risk is deemed low, but considering the unprecedented scale of the epidemic and numbers of survivors, the WHO and the US Centre for Disease Control and Prevention have continued to encourage the promotion of safe sex practices. A vaccine for Ebola has also been developed and is close to approval.

2015 marked the end of the Millennium Development Goals (MDGs). During the 15 year initiative, the MDGs successfully galvanised political will, resulting in unprecedented efforts to reduce global poverty. Extreme poverty declined by more than half and reductions were seen in the proportion of undernourished people in developing regions and the number of out-of-school children of primary school age. Globally, the mortality rate of children under-five more than halved and maternal mortality fell by 44% worldwide. Yet not everyone has benefitted equally; the poorest and most disadvantaged in society have quite often been left behind.

The 2030 Agenda for the Sustainable Development Goals (SDGs), which were launched this year, hopes to build on the MDGs and address these inequalities. It is an ambitious set of new goals, 17 in total with 169 targets altogether, centred on the vision of development through equality and the implementation of sustainable economic, social and environmental policies. Unlike the MDGs, health no longer takes centre stage, with only goal three, ‘ensure healthy lives and promote well-being for all at all ages’, specifically addressing it. Whilst other goals have health related targets, addressing risk factors such as poor sanitation and malnutrition, there is some concern that there is no coherent vision for health in middle- and high-income countries where the health burden is predominantly from non-communicable diseases; risk factors such as unhealthy diet, obesity and inadequate physical exercise are not addressed.(1) The overall successes of the MDGs inspires hope that the same collective action and funding commitment will be directed towards the SDG agenda maintaining the momentum required to take on the global health challenges ahead.

References

1. Murray CJ. Shifting to Sustainable Development Goals–Implications for Global Health. The New England Journal of Medicine. 2015;373(15):1390-3.

 

Cambridge launch new open access journal – Global Health, Epidemiology and Genomics

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Cambridge unveils new Open Access journal – Global Health, Epidemiology and Genomics (GHEG)

Cambridge University Press is delighted to announce a major new open access journal, Global Health, Epidemiology and Genomics (GHEG), dedicated to publishing and disseminating research that addresses and increases understanding of global and population health issues through the application of population science, genomics and applied technologies.

Global Health, Epidemiology and Genomics is the Press’s second Open Access journal in the field of global health, joining Global Mental Health which launched in 2014. Spanning both non-communicable and communicable diseases, GHEG will specifically integrate epidemiology, genomics and related technological advances in the global health context. Topics relevant to GHEG will include studies, methods and resources relating to global population health, disease aetiology, variation in disease susceptibility, drug resistance and surveillance, health care and health care systems, pharmacogenomics and stratified medicine, as well as the challenges of implementing new developments into clinical practice and the community, globally. In addition to more traditional Original Research and Review Articles, GHEG will support submission of Resources and Analyses that provide a framework for integrating and facilitating genomics and global health studies.

The Editor-in-Chief of GHEG is Dr Manjinder Sandhu, head of the Global Health Group based at the University of Cambridge and the Wellcome Trust Sanger Institute. The international Editorial team includes recognised leaders in global health, epidemiology and genomics from around the world who have taken a lead in shifting attention and action to global health and populations, as well as a wider Editorial Board that will reflect and emphasize the broad scope of the field.

Dr Sandhu said, “I am committed to making GHEG an innovative, engaging and practical resource for the global health research community through which we can publish new scientific research, exchange ideas within and across our related disciplines and share resources to facilitate efforts to increase our understanding of human health and shape effective disease management worldwide.”

Professor Alex Brown, Deputy Director of the South Australia Health & Medical Research Institute (SAHMRI) and one of the journal’s Associate Editors commented, “I am delighted to be involved with GHEG, an exciting venture which recognises the relevance and importance of the work being undertaken in the field of global health, epidemiology and genomics and the widespread benefits to be gained by applying technological advances and innovations to research into population health including within disadvantaged population groups. By facilitating discussion and encouraging the sharing of resources GHEG looks to actively support contributions in these areas.”

Katy Christomanou, Publishing Director for STM Journals at Cambridge University Press, added, “This launch affirms our long-term commitment in the global health field and reflects our strong investment in maintaining and extending our successful presence in this area. We are highly enthusiastic at the prospect of working alongside such an outstanding editorial team.”

Global Health, Epidemiology and Genomics will be hosted on Cambridge’s industry-leading platform, Cambridge Journals Online (CJO). The Journal will benefit from a range of the latest author services including article level usage metrics and Altmetric data. In addition, for articles submitted during 2015 and 2016, Cambridge University Press will waive all article processing charges.

For more information please visit the journal website: journals.cambridge.org/gheg

 

DMPHP Special Issue on Ebola

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Accurate knowledge regarding Ebola is critical and pertinent for practicing physicians and clinicians given the current risk of hazardous global outbreak and epidemic. Disaster Medicine and Public Health Preparedness has launched a special issue, Ebola Virus and Public Health, to surround the public, medical professionals and media with necessary knowledge in this critical societal moment.

As part of this special issue, the journal has published A Primer on Ebola for Clinicians. The primer was prepared by Dr. Eric Toner, internist and emergency physician, as well as Amesh A. Adalja and Thomas V. Inglesby (all of the University of Pittsburgh Medical Center). The primer discusses the history, epidemiology, microbiology, clinical manifestations, biosafety, prevention, treatment and experimental vaccines to offer an informative and inclusive background on the Ebola virus for clinicians.

The scale of the uncontrolled outbreak in Western Africa makes further exportation to other parts of the world an unfortunate possibility (as citizens across the globe have already witnessed, with cases appearing in Europe and the United States). Those who serve at the frontlines of emergency medicine, critical care, infectious diseases and infection control are in high need and demand, and in some cases, high risk. The primer provided by the UPMC professionals offers clear and concise information on the fundamentals of the virus, including its diagnosis, treatment and control. The public and media are especially apt to benefit from the clear and accurate information provided by the primer, as the popularity of social media makes misinformation about Ebola easily (and rapidly) sharable, believed and misattributed.

The DMPHP Special Edition on Ebola has been designed from the outset to be a conduit for operational and policy level information that will improve outcomes and decision making, and to ensure that this information is available to all practitioners.

As such, published contributions will go online immediately after appropriate review and placed chronologically to ensure a ready historical track for future review and debate. The Special Edition will be made available to everyone in the field as well as at the policy level decision makers worldwide.

View the special issue contents here free of charge. More articles will be added as soon as they become available online.

 
The SDMPH have released press releases on some of these papers- you can view these by using the links below:

Volunteer guidelines for clinicians in the ebola epidemic
A Primer on Ebola for Clinicians
Special issue on Ebola

 

 

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