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”

Sociology, Stigma and Innovation – Sam Rowlands on editing a book about abortion

Abortion Care Cover

After last month’s article about the journey of a medical book from an author’s perspective, this month we hear from Sam Rowlands, editor of Abortion Care, about editing a book which boasts more than 40 contributors – and which is about a particularly emotive topic…

There aren’t many medical books dedicated to abortion care. I felt there was a gap in the market for a smaller book that could be easily carried around. I wanted to produce a book that had all the conventional ingredients such as the methods of abortion, complications and so on but also looked at abortion from a wider perspective.

I drew up a list of around 30 chapters and identified potential authors for each. Cambridge were keen for the book to have international appeal so I endeavoured to select recognised specialists from around the world. I am fortunate to have met many of these personally through my career in sexual and reproductive health but still I was delighted (and surprised) that most of the colleagues I chose readily agreed despite their very busy schedules. I was then intrigued by how many chapter authors (15) asked to collaborate with their selected colleagues. This has resulted in an even richer authorship.

I had originally thought I might ask a couple of collaborators to co-edit with me but on reflection decided to edit the book on my own. The advantage of this was that I could be in control and do things my way, especially as I had by now a clear view of how the book would look. The downside was that when more than 20 chapter manuscripts arrived in a rather short space of time, I felt a bit overwhelmed! The lead chapter authors are all authorities in their fields. Some are academics and some are skilled practical clinicians, some both. Some are neither of these, just incredibly knowledgeable and wise. All authors developed their chapters in their own way; I encouraged them but tried not to steer them in any particular direction.

Although the book is mainly for readers with a medical bent, I have tried to include chapters to stretch their minds on topics that they might not necessarily otherwise tackle. Sociological topics are included but the authors of these were banned from using inaccessible terminology! There are two chapters with an epidemiological flavour which are not too daunting even to the numerically-challenged. There are two chapters written by lawyers which really flow, despite references to statute and case law.

Although the book is about a controversial subject and is bound to be serious in most of its content it is written in language that I hope is accessible and uses a lighter touch at times, for example a quote from Monty Python in the ethics chapter. The historical chapter provides a wonderful backdrop, painting a vivid picture of days gone by with some poignant examples of tragic cases. Stigma is a theme that runs through the book. Half a chapter is dedicated to this but reference is also made elsewhere, particularly in the chapter on staff. Although we all know that abortion is stigmatised, it’s only quite recently that it’s been written about and even measured.

I tried to include some innovations in the book and two chapters come up trumps in this respect. One covers abortion care provided by personnel other than doctors, showing that all the evidence points to this being not only safe but actually preferred by many women. The other looks to the future and shows how telemedicine can be applied to facilitate communication and treatment when the clinician and the woman are not in the same place, which has potential to improve access in more rural areas or in those parts of the world with restrictive regimes.

I’ve found it very rewarding to head up this project but don’t claim it is perfect. I invite anyone to make suggestions for a second edition.

Sam Rowlands MBBS, MD, LLM, FRCGP, FFSRH, Clinical Lead in Community Sexual and Reproductive Health, Dorset HealthCare and Visiting Professor, School of Health & Social Care, Bournemouth University

Sam Rowlands is the editor of Abortion Care (out now).

Ethics and force-feeding prisoners on hunger strike « Medicine « Cambridge Journals Blog

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Health Professionals Who Participate in Force-feeding Prisoners on Hunger Strike at Guantanamo Bay Should Lose Professional Licenses

Force-feeding Violates Medical Ethics and Amounts to Torture

Physicians and other licensed health professionals are force-feeding hunger strikers held prisoner at the US Naval Base at Guantanamo Bay (GTMO), Cuba. These health professionals are violating the medical ethics they swore to uphold and are complicit in torture, according to the authors of an article published in Prehospital and Disaster Medicine. Dr. Jennifer Leaning, Director of the FXB Center for Health and Human Rights at Harvard University, and her Harvard colleagues, Sarah Dougherty, Dr. Gregg Greenough, and Dr. Frederick Burkle, urge the licenses of health professionals who participate in force-feeding be revoked. Leaning and her co-authors also call for the medical profession to demand changes in military medical management protocols and stronger protections for military health professionals who protest unethical orders.

Historically, the treatment of hunger strikers has been difficult for health professionals, particularly those employed in institutional settings, because the practice raises profound clinical, ethical, moral, humanitarian and legal questions.

Leaning and her co-authors note that hunger strikes are political acts, not medical conditions. Hunger strikers refuse food on a voluntary, informed basis and without suicidal intent. At GTMO and elsewhere, force-feeding involves the use of force and physical restraints to immobilize hunger strikers without their consent and against their express wishes—actions which constitute battery and violate basic human dignity. The US Department of Defense (DoD) force-feeding policy and protocols are a “gross violation” of US and international ethical standards prohibiting force-feeding of hunger strikers.

The DoD has also ratified the practice through a longstanding policy of vetting health professionals assigned to GTMO. Military health care providers have the same medical ethics obligations as civilian providers, but as military personnel are also required to obey lawful orders. Because force-feeding has been found lawful under US civilian and military law, military health professionals at GTMO ordered to force-feed hunger strikers must choose between upholding medical ethics and obeying the law.

“Given the failure of civilian and military law to end force-feeding, the medical profession must exert policy and regulatory pressure to bring DoD policy and operations into compliance with established ethical standards,” says Jennifer Leaning. “We join those medical and ethical authorities who have called for investigations into the force-feeding at GTMO and for sanctions where appropriate. This paper is the first in the medical literature to review the history of exhausting attempts at remedy through US law and presents the tight argument for why only the US medical profession can adequately uphold professional standards of medical ethics through its licensing power. When the law has become deferential to the claims of civilian and military institutions, our only ethical bastion as physicians and health care providers is the national and international guild we have built and belong to. The professional battle to uphold principles of medical ethics and human rights has often in the past proved grossly feeble against prevailing institutional pressures. We turn away from this instance at our collective peril.”

“Political events and actions are increasingly forcing physicians and other health care professionals to choose between medical ethics and US law,” says Dr. Samuel J. Stratton, Editor-in-Chief of Prehospital and Disaster Medicine. “In both military and civilian contexts, the issues surrounding force-feeding are complex and contentious, and should be subject to rigorous examination and debate. Prehospital and Disaster Medicine intends to publish additional papers adding to the debate on how health professionals should navigate this important ethical dilemma.”

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The paper “Hunger Strikers: Ethical and Legal Dimensions of Medical Complicity in Torture at Guantanamo Bay” can be viewed free of charge for a limited time here.

A companion paper, providing historical perspective from the emergency management of refugee camp asylum seekers, can also be viewed free of charge for a limited time here.

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via Ethics and force-feeding prisoners on hunger strike « Medicine « Cambridge Journals Blog.

Transplanting Autoimmune Research

Blog Post by Jonathan Kimmelman, Assistant Professor, Biomedical Ethics Unit/Social Studies of Medicine, McGill University, Quebec, Canada

What’s the difference between testing a typical small molecule drug, and testing a novel cell therapy strategy? And where might the latter raise ethical challenges that the former doesn’t? These questions are extensively discussed in my book, and given human drama in a recent story by Jennifer Couzin-Frankel in the Feb 12, 2010 issue of Science (“Replacing an Immune System Gone Haywire“). Read more of this post

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