1 comment on “Perceptions of EVD Research — August 2017 Progress Report”

Perceptions of EVD Research — August 2017 Progress Report

One year into this project, we are finalizing data collection, moving forward with analysis, and have begun dissemination activities. Progress includes:

Fieldwork:

  • We have conducted interviews with 108 stakeholders, over 90% of these being with stakeholders in the three countries most severely affected by the epidemic: Guinea, Liberia, and Sierra Leone.
  • Stakeholders include:
    • Research participants, people who opted not to participate in research projects for which they were solicited, and proxy-decision makers who made treatment decisions for relations too ill to provide consent
    • Research Ethics Board members who evaluated proposed research projects, either for national-level boards serving affected countries or for organization-specific boards operating within international organizations that assisted with the response
    • Investigators who led or supported research projects conducted during the outbreak, as well as healthcare providers who worked on the frontlines of the epidemic, administering experimental interventions and monitoring patients’ condition
    • Public sector representatives who were called on to oversee or regulate research conducted during the epidemic: decision-makers in health and other ministries involved in planning the response to the epidemic; representatives of Ebola survivors’ associations and other civil society groups; others
  • We have spoken to people involved with a range of research projects: vaccine trials, pharmaceutical and other intervention trials, and observational studies.

Analysis:

  • We have conducted a review of publications exploring or addressing ethical and practical challenges associated with research conducted in West Africa during the Ebola outbreak. Over 2,000 peer-reviewed articles were selected for screening by members of the research team; of these, over 100 were selected for inclusion in the review. Findings are currently being written up for publication.
  • Analysis of interviews is underway. Draft report of findings will be ready by November 2017.
  • We are preparing meetings to present and discuss draft report of findings with stakeholders and research participants in West Africa in November-December 2017. Participants’ feedback will be incorporated into analysis and output materials.
  • We are preparing a meeting of co-investigators in Hamilton in December 2017. This will serve to finalize findings, prepare a recommendations draft paper, and finalize components of a webinar (to be held in January).
EVD Report Pic
Photo: Ebola education mural outside Université Sonfonia, Conakry, Guinea.

Outputs to date

Invited Presentations

Nouvet, Elysée (2016) Recherche anthropologique au service de la santé publique : méthodes, considérations, et EER (évaluation ethnographique rapide). Training session presented to the Comité National d’Évaluation de la Recherche en Santé (CNERS), Conakry, Guinée, le 19 décembre

Schwartz, Lisa (2016) L’éthique de recherche socio-anthropologique. Training session presented to the Comité National d’Évaluation de la Recherche en Santé (CNERS), Conakry, Guinée, le 19 décembre

Peer-Reviewed Presentations

Nouvet, Elysée & Schwartz, Lisa (2017) From the front lines: Trialing research ethics in the time of Ebola. Paper presented at the World Association for Disaster and Emergency Medicine Congress on Disaster and Emergency Medicine. Toronto, Canada. April 28th

Nouvet, Elysée (2017) The need to care, learn, and improvise: Enacting research ethics during the West Africa Ebola outbreak. Paper accepted for presentation at Ethox: Oxford Global Health and Bioethics International Conference. University of Oxford, Oxford, England. July 17-18th

Pringle, John (2017) Lessons in research ethics: Experiences of clinical research participation during the West Africa Ebola crisis. Paper accepted for presentation at Ethox: Oxford Global Health and Bioethics International Conference. University of Oxford, Oxford, England. July 17-18th

Workshop Participation

Pringle, John. Ethical Design of Vaccine Trials in Emerging Infections Workshop. Hosted in conjunction with the Oxford Global Health and Bioethics International Conference and Sponsored by a Wellcome Strategic Award and the Ethox Centre. University of Oxford. July 18-19, 2017

 

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Foundations – Gautham Krishnaraj

Foundations.

Perspectives from a new Global Health Student and Humanitarian Health Care Ethics Research Group Trainee

Gautham Krishnaraj, MSc Global Health Candidate (McMaster University)

From Montreal…

In September 2014, at the peak of the Ebola outbreak that inundated the minds of media and global citizens alike, I found myself in an unlikely situation. I, as a third year Microbiology & Immunology student at McGill University, was working as part of a global coalition of health professionals to research, compile and brand training protocols for the International Medical Corps (IMC). Here, I was able to see the laboratory techniques and virology concepts I was learning in the classroom be applied in real time by the IMC’s Multi-Agency Training Collaboration (MATCO) to support the Ebola response in West Africa. As an aspiring Humanitarian Health Care Professional, it was an exciting first exposure to this fast paced, international, and interdisciplinary sector.

…to Hamilton,

Two years later, I find myself in Hamilton Ontario, in a ‘classroom’ that seems to defy all classical connotations of the word. The program, McMaster University’s 12 month Masters of Science (MSc) in Global Health, is a wildly successful (2015 CIBE Program of Excellence) experiment in international collaborative education. This morning’s lecture is a prime example of why; it’s happening 6,000 kilometres away at the University of Maastricht – and next week, students from the Netherlands will tune into our classroom here in Hamilton. Each lecture is followed by a chance to virtually connect with our global groups to work on assigned policies with real-world relevance and impact.

Working through time zones, language barriers, and diverse motivations, we face real challenges and prepare for the rigours of pursing a profession in this sector. One of the first ethical challenges we must consider is the language of correspondence itself; how are we (native english speaking Canadian students) placed in a position of power within our global teams? How does this influence the sharing of ideas and accessibility of information, and how can we work with our peers to dismantle these structures and enable full participation? Furthermore, how do language and regionality impact where, how and to whom humanitarian aid is delivered? With our expert mentors and a plethora of toolkits at our disposal, we will work together to tackle these challenges in pursuit of a greater understanding of this diverse sector. As a trainee in the Humanitarian Health Ethics Group, I hope to delve even deeper into the ethical underpinnings of humanitarian aid, and the impact of working in austere environments on the provision and providers of palliative care. Indeed, we must strive to keep the humanity in our humanitarian workers.

…India…

Perhaps one of the most anticipated elements of McMaster’s MSc. in Global Health is the two-week Learning Symposium at Manipal University, in the Karnataka State of India. Field-based training has been identified as an invaluable asset in the professional development of humanitarian health professionals, and despite having travelled quite extensively, I eagerly anticipate the opportunity to do so under academic/professional auspices. Students from partnering universities will come together from around the world to receive a unique field orientation and engage in critical dialogue surrounding our theses and scholarly papers. In preparation for this international experience, I have looked to Global Health Training – Ethics and Best Practices Guidelines for Training Experiences (Crump et al., 2010) for preliminary ethical considerations to guide my journey through the Program. Crump, Sugarman and the Working Group on Ethics Guidelines for Global Health Training (WEIGHT) identify three main populations in Global Health Training; Sending/Host Institutions, Trainees, and Sponsors, each with unique responsibilities and recommendations.

Focusing on the trainees for the purposes of this discussion, the first responsibility of the trainees is to “Recognize that the primary purpose of the [international] experiences is global health learning and appropriately supervised service.” This may come partly in response to countless case studies such as those presented by Dr. Robert Huish (2012) in a special issue of the Journal of Global Citizenship and Equity Education. Huish draws attention to the various complex ethical conundrums faced by an increasing number of medical students undertaking International Health Electives. Major challenges included “Navigating different cultures [of medicine], moving beyond one’s scope of practice, and unilateral capacity building” (Huish, 2012) (Elit et al., 2011). These situations not only place the trainee under immense stress, but also increase the liabilities of the institutions and diminish the quality of care received by the local populations.

The McMaster program appears to address these challenges and reflect the priority of learning by means of a tightly facilitated curriculum with a diversity of mentors to guide personal, professional and academic growth. Furthermore, being immersed in the Symposium’s academic setting should allow deeper engagement with cultural and local contexts, ideally allowing us to “demonstrate cultural competency and engage in appropriate discussions about different perspectives” (Crump et al., 2010).

…and beyond.

It remains to be seen if the two-week Symposium will provide sufficient field exposure for students to concatenate theoretical to practical competencies, and then demonstrate them during our practicums and thesis research. The fields of Global Health and Humanitarian Health Care not only share inherent ethical challenges, but also both suffer from a lack of professionalization and standardized competency based-training (Johnson, 2013). McMaster’s blended (online, in-class, field-based) classroom model is also particularly adaptable to the mobility needs of Humanitarian Health Care Professionals. I anticipate that this program will continue to evolve with each passing cohort, and provide valuable insight into the future of ethical Global Health and Humanitarian Health Care training for years to come.

References:

Crump, J. A., Sugarman, J., & Working Group on Ethics Guidelines for Global Health Training (WEIGHT. (2010). Ethics and best practice guidelines for training experiences in global health. The American Journal of Tropical Medicine and Hygiene, 83(6), 1178-1182.

Elit, L., Hunt, M., Redwood‐Campbell, L., Ranford, J., Adelson, N., & Schwartz, L. (2011). Ethical issues encountered by medical students during international health electives. Medical education, 45(7), 704-711.

Huish, R. (2012). The ethical conundrum of international health electives in medical education. Journal of Global Citizenship & Equity Education, 2(1).

Johnson, K., Idzerda, L., Baras, R., Camburn, J., Hein, K., Walker, P., & Burkle, F. M. (2013). Competency-based standardized training for humanitarian providers: making humanitarian assistance a professional discipline. Disaster medicine and public health preparedness, 7(04), 369-372.

0 comments on “On captions”

On captions

640px-Oxfam_East_Africa_-_A_mass_grave_for_children_in_Dadaab

Children have walked for weeks across the desert to get to Dadaab, and many perish on the way. Others have died shortly after arrival. On the edge of the camp, a young girl stands amid the freshly made graves of 70 children, many of whom died of malnutrition. Photo: Andy Hall/Oxfam. From: https://commons.wikimedia.org/wiki/File:Oxfam_East_Africa_-_A_mass_grave_for_children_in_Dadaab.jpg

On captions

Susan Sontag, in explaining the way a single photograph can be used to support any number of points of view, stated that “all photographs wait to be explained or falsified by their captions” (2003: 10).  Photographs are ambiguous. This might seem counterintuitive because of the realism represented by pictures made with a camera. But photography does not provide meaning, it provides data. The surfeit of information that photographs contain require narratives to assign meaning, to develop understanding. More often that not, these narratives come in the short text called captions.

When a photograph is believed to be able to speak for itself, the captions are often limited to information on the time and place when then image was made. In this case, meaning comes through the narrative surrounding the use of the picture: articles, presentations, juxtaposed images. The ambiguity of a photograph allows it to be repurposed for many different ends. The ambiguity of a photograph also means that it has mutable relevance and force across space and time.

The affective elements of the photograph selected for the Summer 2016 edition of Reflections (Vol.4 No.2)—a lone child standing in an arid landscape, in front of numerous fresh-looking graves—draws viewers in. If used in other instances, that emotional grab might be taken advantage of and used to manipulate a donation out of people (Berger 2013). The photograph  would have a different meaning had it been on an aid agency donor-solicitation pamphlet, and different again between rights-based or religious-based aid agencies. In our case, the picture quickly turns to an educational moment because of the caption, which was the caption provided for this photograph in its original source location on the Wikipedia page about the 2011 East Africa drought. Given the wider context of the focus of this edition of Reflections on palliative care in humanitarian crises, the meaning becomes much more specific about the reality of death in certain crisis situations, thus supporting the recognition of the moral and practical imperative for humanitarian organizations to support palliative care.

 

Photograph:

Andy Hall/Oxfam; source, https://commons.wikimedia.org/wiki/File:Oxfam_East_Africa_-_A_mass_grave_for_children_in_Dadaab.jpg

 

Reference:

Sontag, S. 2003. Regarding the Pain of Others. Picador

0 comments on “Our global complicity in torture? Palliative Care & Ethics”

Our global complicity in torture? Palliative Care & Ethics

Original Title: mmills_medicalsupplies0021.tif

by Brett Sutton

When I was first introduced to palliative care as a medical student, it struck me as a rather mysterious medical specialty. Remarkable in its acceptance of death and dying, when all the rest of us were battling to save lives, almost as an end in itself. Doctors always out to ‘cheat death’, regardless of means and sometimes wilfully disregarding the suffering incurred along the way. Palliative care practitioners in stark contrast appeared to me to be amazingly resilient,with depths of compassion and a unique medical perspective. I still think that.

Now, though, after a twenty year career in emergency medicine and later public health, I don’t see palliative care through that mysterious lens anymore. After work in Afghanistan, Ethiopia, Timor-Leste and beyond, I can’t conceive of it as a kind of ‘add-on’ medical specialty, reserved for a very few for whom “nothing more can be done”. Ah, yes. Nothing more can be done. I hate that saying. As if curative treatment is the only thing that counts. That pain relief means nothing. That loving kindness and relief of suffering are nothing. So very much can be done in the last days of a person’s life; it can mean the world to them and their family.

I wish I’d had better palliative care skills when I worked in Afghanistan, for Médécins Sans Frontières (MSF). One of my patients with tuberculosis was dying, probably from drug-resistant TB, following years of inadequate, ad hoc, unsupervised treatment. It was typical for the very poor to buy only as many TB drugs as they could afford at the time, perhaps lasting a week or two. They’d get better, then relapse and weeks or months later buy some more. And instead of taking four different TB drugs together to prevent resistance, they’d take just one. All freely available, without prescription, to anyone willing to pay. She was only in her twenties and she was dying, despite MSF’s dedicated and robust TB program. We simply didn’t have the second-line drugs she needed; they cost one hundred times more and were – at the time – pretty toxic.

Her husband and I were sitting in the back of the MSF car, having just been at home with her to try to understand why she was worsening. I’d concluded she was dying (and probably thought nothing more can be done) but I didn’t know how to tell him, this devoted man who had no doubt hoped to begin a family and have a long life with her. He turned to me and said something in Farsi, and so I looked at the translator, expectantly. The translator looked down, silent for a time, and then told me that he’d asked: “Shall I buy a shroud?”

“A what?” I said.

“A shroud. You know, for her…burial” said the translator.

“Oh…um…she…” I mumbled. I looked at this already grieving man as he held my gaze intently. “Yes…” I said.

In many ways this young woman was lucky. We provided some basic support to her. She wasn’t in pain. Her treatment, although futile, was free. She wasn’t alone as her husband lovingly cared for her in the mud brick shelter of the internally displaced person’s camp. She died two days later. For many in the world today dying occurs in much more bleak circumstances; sometimes in hellish circumstances.

In the MSF-supported hospital in Herat, Afghanistan, other women were manifestly less fortunate. The obstetric ward would receive many women who finally arrived after days of obstructed labour in their remote village. They needed Caesarean Sections to deliver their children; children who were invariably, tragically, already dead. Without ketamine, a wonder drug which can be used safely for surgery in developing and developed countries alike, these women received only intravenous diazepam (Valium). It doesn’t provide pain relief, only sedation. So as they awoke, not only were they hurriedly presented with their dead child to take home and bury, but they awoke in physical agony. Not allowed more than five minutes on the bed, due to the sheer pressures of arriving women, they were discharged home. And what pain relief were they given then? Acetaminophen; better known as Tylenol. Two tablets, then home. What you and I would take for a mild headache, they took for major surgery.

Opioid painkillers – such as morphine – are what these women should have received. Cheap, effective and safe, morphine should be readily available across the world, yet it is still highly restricted in so many places. In part due to an absurd ‘war on drugs’ and also because of an irrational fear of fomenting addiction, opioids remain grossly underutilized. The UN General Assembly Special Session on Drugs (UNGASS) closed in New York this April with lip service to a public health-focused strategy on the drugs wars. With such global intransigence and lassitude apparent, some countries are pressing ahead with liberalization reform for illicit drugs. Yet there’s little progress on the availability of opioid medication in places where it is most needed, such as Afghanistan and India.

Most of us have experienced severe, uncontrolled pain for minutes, perhaps hours. A few of us are unfortunate enough to suffer chronic pain, but at least we can seek expert advice and relief of some kind. And we’re not dying. Yet palliative care is still unavailable for far too many at the end of life. In 2009, Human Rights Watch estimated that in India more than one million patients with advanced cancer suffered severe pain in any given year. They estimated that fewer than 4% of patients had access to appropriate pain treatment (that’s code for opioids). This was a consequence of restrictive drug regulation, poorly trained doctors and poor integration of palliative care into health services.

Some have debated as to whether allowing patients to suffer intolerable pain amounts to cruel, inhuman or degrading treatment. Even torture. Torture, however, implies a wanton and malicious desire to inflict pain. I don’t believe that occurs in the vast majority of individuals who suffer without access to adequate pain relief, even when it’s withheld deliberately. Yet debates regarding our legal and ethical obligations are important – indeed essential. They just shouldn’t be left entirely to legal arguments in Courts of Human Rights. There is a moral imperative here to address complicity through inaction in suffering on a global scale, especially for those at the end of life. Semantics and legal nit-picking take us away from the pressing need to address the circumstances that we all agree are indefensible – leaving someone in intolerable pain when relief from suffering is easy, safe and affordable.

Imagine you were dying and suffering from constant, severe pain that made you wish for death. Treatable pain. Opioid medication could readily alleviate it, but it wasn’t given to you. Cruel? Inhuman? Degrading? Torture? What would you call it?

Dr Brett Sutton is a public health doctor, co-chair and co-founder of Palliative Care in Humanitarian Emergencies (PCHE).

This blog was originally published on Brett Sutton’s LinkedIn page: https://www.linkedin.com/pulse/our-global-complicity-torture-brett-sutton?trk=prof-post

Photo credit: CDC/ Amanda Mills

0 comments on “WADEM + HumEthNet = 2017 Ethics Workshop”

WADEM + HumEthNet = 2017 Ethics Workshop

Get involved!

HumEthNet is building a strong presence on ethics for WADEM2017 in Toronto.

For more information about ethics@WADEM please contact Renaud Boulanger or Lisa Schwartz.

 

________________________________________________________________

From the WADEM organizers:

Save the Dates – WADEM Congress on Disaster and Emergency Medicine 2017!

Toronto, Canada – Save the dates for the WADEM Congress on Disaster and Emergency Medicine 2017! The Congress, co-hosted by the Sunnybrook Health Sciences Centre and the CBRNE Collaborative, will convene from 25-28 April 2017 at the Westin Harbour Castle in the vibrant city of Toronto, Canada.

The Congress will be WADEM’s 20th biennial meeting of global experts to exchange knowledge and best practices on disaster and emergency health. More than 800 health care professionals, researchers, and students from 63 countries participated in the last Congress in Cape Town, South Africa in 2015–and it is expected that more will be Toronto!

In 2015, the United Nations International Strategy for Disaster Risk Reduction (UNISDR) estimated 346 global disasters which resulted in 22,773 deaths, affected 98.6 million people, and caused $66.5 billion (USD) in damage. Migration and population displacement, as well as infectious diseases of international concern, continue to challenge our disaster health and medical response systems in unprecedented ways. WADEM continues to work closely with UNISDR to engage in the health component of the Sendai Framework for Disaster Risk Reduction and will share insights at the Congress in Toronto.

WADEM and its international partners strive to improve the scientific basis for disaster and emergency health practice and to establish best practices based on validated evidence. The outcomes of this work protect communities, reduce morbidity and mortality, improve recovery, and enable the development of more resilient communities. Congress participants will have an opportunity to engage in these important discussions in a forum with their peers.

This Congress will feature an exciting and innovative scientific program of plenary sessions, workshops, oral and poster presentations, and social events. Networking will begin pre-congress with opportunities to participate in track development and online discussions. Simulations will be highlighted. Continuing Medical Education (CME) accreditation is planned for the Congress.

Toronto is one of the most culturally diverse cities in the world with over 100 communities that influence its world-class dining, art, music, and entertainment. Toronto’s international atmosphere inspires creativity and forward thinking.

 

0 comments on “Autumn edition of Reflections newsletter now available!”

Autumn edition of Reflections newsletter now available!

Check out the latest edition of the Reflections newsletter and archives of past issues.

In the Autumn edition:

  • HumEthNet member Stephanie Nixon is profiled In Focus;
  • Maria Berghs provides a provocative commentary on “Disability and humanitarian healthcare ethics”;
  • A rich collection of new publications are listed including a new bioethics case study published by HumEthNet members on the Royal College of Physicians and Surgeons of Canada website, and the recently released report by Handicap International Disability in Humanitarian Context; and
  • The launch of the humanitarian health ethics research group’s newly redesigned website.

Be sure to contact us with comments on this or any previous edition, or if you want to contribute to the next issue.

0 comments on “New Case in the ENHA Case Study Series”

New Case in the ENHA Case Study Series

Case studies are made available for a variety of training and reflection purposes. They can be used in conjunction with the Humanitarian Health Ethics Analysis Tool (HHEAT) or on their own.

Patient Transfer During Period of Heightened Security Threat

Setting: A field hospital set up by a team of foreign health care practitioners working with an international non-governmental organization, in the aftermath of a powerful earthquake that destroyed major infrastructure including public buildings and hospitals. The field hospital is situated in a rural area outside the capital and run in collaboration with local staff from a health clinic that was destroyed by the earthquake. 

Read the full case.