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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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Colleagues at CERAH ask: How do you speak humanitarian?

From the creators of the The Humanitarian Encyclopedia:

The Humanitarian Encyclopedia is a collaborative project with humanitarian and academic partners, based on co-creation, combining theory and practice to support the growing ranks of humanitarian stakeholders in their strategic thinking, design and implementation of humanitarian responses.

It responds to the documented need to interrogate how terms and concepts used in humanitarian action are understood and applied across time, cultures, and organizations. This shall support the reflective involvement of an expanding range of stakeholders while building on the existing theoretical and empirical knowledge and practical experiences at local and regional levels.

Visit the site often and see how you can be involved in continue to build a humanitarian language.

 

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Hear Lisa Schwartz explain HHE’s project on palliative care in humanitarian contexts

From a new resource on Community of Practice for Integrated People Centred Palliative Care by WHO, info@integratedcare4people.org.

Additional interviews prepared by WHO’s Community of Practice for Integrated People Centred Palliative Care:

Interview of Dr Christian Ntizimira Médecin Head of Avocacy & Research department of Rwanda Palliative Care and Hospice Organization
Interview of Katherine Pettus, Advocacy Officer for Human Rights and Palliative Care at International Association for Hospice & Palliative
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Hot off the press! REFLECTIONS newsletter: Volume 5 Issue 1, Summer 2017

ACCESS THE FULL SUMMER 2017 ISSUE HERE.

 

Refugee Health: ensuring and asserting Well Being

We’re all familiar with pictures of refugee camps and of settlements inhabited by people forced from their homes. Depicted are shelters, some more roughshod than others. The structures can provoke a range of emotions, the least likely of which are feelings of comfort and belonging. These are really not the types of places people would call home if circumstances allowed. While the pictures do provoke reactions, the types of which are determined largely by our subject position, there is much these pictures cannot tell. The pictures can invite us—if we are willing—to look beyond their content, beyond their frame. In that case, what we are looking at transforms from pictures of shelters to commodities of a capitalist humanitarian system, to products of generations of global structures of violence, of transnational mechanisms of exclusion, and of regime made disasters, and to pictures of new, makeshift communities. The pictures can also help us imagine (so much as imagining is possible considering that even they are shaped by our cultural and personal experiences) the life people left behind, the good times, the terrifying ones, the ways of life gone perhaps forever and the ways of life currently lived and being adapted to. We may even gain a sense through the images of the ongoing anxieties, the hopes, and even the dreams (the latter having even become the focus of some recent photography of refugee experiences) of people whose trajectories have been forcibly altered. For the luckier ones, these places will be temporary residences. For others, these will be the last places they know as age, disease or the extensions of conflict take their lives.

This issue of reflections focuses on the politics and ethics of healthcare provision to refugees. The provision of healthcare to individuals displaced and on the move is an ethical imperative. It involves a responsibility to attend to the physical or emotional suffering of people, and it is also as a way of extending and integrating newcomers into their new (possibly, but not likely, temporary) community.

Also included in this issue are reports on refugee healthcare in two countries that have been taking a great proportion of Syrian refugees. One is a broad overview of refugee healthcare in Jordan—with a particular focus on palliative care—produced by McMaster Global Health student Madeline McDonald. The other is a summary prepared by Dr. Michel Daher about the ethics and the current state of providing universal healthcare to refugees in Lebanon. In their own way, each report reveals the extent to which the governments and healthcare professionals in these countries are inherently involved in attending to the physical and psychological wellbeing of their new, unexpected arrivals. The reports also point to where current practices fall short, especially as concerns the response by the larger global community, thus providing us with more knowledge with which to read pictures of refugee experiences.

With over 65 million people having been forcibly displaced from their homes there is a growing sense of normalization around this phenomenon, even though to consider this situation as the new (or growing) norm is grounds for provoking indignation, as John Pringle demonstrates in this edition’s Commentary. A degree of normalization within the camps and settlements, however, is a crucial imperative for those living within them as it provides an existential sense of wellbeing, and of being a Well Being rather than disposable. This is the theme uniting ongoing projects summarized in this issue.

Sincerely,
Sonya de Laat, PhD(c)
Co-Editor of Reflections,
PhD candidate in Media Studies, FIMS Western University
Research Coordinator, HHE research group, McMaster University

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In Focus: Olive Wahoush

Photo courtesy of Olive Wahoush.

HHE Member Profile

Dr. Olive Wahoush has been an advocate and researcher of refugee health care since 1987. She came to this topic first through teaching undergraduate nurses maternal newborn health in a refugee camp in Jordan in the 1987 and later through hospital administration and volunteer roles in Pakistan and Canada. Olive trained as a nurse in Northern Ireland during the 1970s a period of civil conflict, during that time she was exposed to ethical issues around triage, resource allocation, discrimination, and direct patient care. Later during her time as a nurse educator and leader in the Middle East and Pakistan she became interested in global health issues when she was exposed to situations where populations were on the move, capacity development was essential in health service programs and in health professional education.

Olive emigrated to Canada in 1992 and continued to build on her interests in maternal and child health, community engagement and outreach to include vulnerable and underserved groups in Hamilton and Toronto. She completed her PhD at UofT and her doctoral research examined health care access and experiences of refugee and refugee claimant families in Hamilton. Through her roles at the School of Nursing at McMaster University, Olive was instrumental is leading and promoting research with refugees, newcomers and other underserved populations. Many undergraduate and graduate students now complete experiential learning placements in Hamilton, Toronto and Internationally with agencies serving refugees and other underserved groups.

When it comes to health for refugees as they work to settle in a new environment, Olive sees equitable outcomes as a fundamental ethical concern, it is not enough to focus on access, some people need more help than others to get to the same outcome. For example newcomers such as refugees need time, language development and information about their adopted country and the new systems they need to use to live well. When asked about what the main priorities are for refugee healthcare abroad, Olive identified respect and recognition of refugees’ situations and conditions [or, refugeedom] as a priority area for researchers concerned with ethical dimensions of care or of research. Although there are common concerns across refugee populations that enable rapid response programming, there are also significant differences related to the circumstances such as war or climate change and history affecting populations, settings and individuals.

Recent research Olive has been involved in or leading include studies focused on reproductive health, health and resettlement of refugee and refugee like families in Canada and exploring the selection process for refugees in transit countries like Jordan. She has recently become a co-investigator on the HHE project exploring ethical aspects related to palliative care in humanitarian crisis situations. She has made invaluable connections with practitioners, academics and researchers on the ground in Jordan in order to learn about the provision of palliative care in refugee contexts (in camps and in urban settings) in that country.

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New WHO guidelines on ethical issues in public health surveillance

From our colleagues at the World Health Organization:

Nuevas pautas de OMS sobre ética en la vigilancia de salud pública

Estas pautas, recientemente publicadas por OMS, constituyen el primer marco internacional para dar orientación ética en los temas de vigilancia en salud pública. Están disponibles (en inglés) en:http://apps.who.int/iris/bitstream/10665/255721/1/9789241512657-eng.pdf?ua=1

Para recibir más información y recursos sobre ética de la salud pública, suscríbase a la lista de OPS dedicada al tema usando el siguiente enlace:  http://listserv.paho.org/scripts/wa.exe?SUBED1=PUBLICHEALTHETHICS&A=1

 

New WHO guidelines on ethical issues in public health surveillance

These guidelines, recently published by WHO, are the first international framework to provide ethics guidance on issues in public health surveillance. They are available at:http://apps.who.int/iris/bitstream/10665/255721/1/9789241512657-eng.pdf?ua=1

To receive more information and resources about public health ethics, subscribe to PAHO’s list devoted to the topic using the following link: http://listserv.paho.org/scripts/wa.exe?SUBED1=PUBLICHEALTHETHICS&A=1

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The Global Migration Crisis in an Age of Moral Austerity: Reflections in Humanitarian Ethics

by John Pringle

Dire words abound: “Global forced displacement hits record high”[1] and “We are currently witnessing the largest and most rapid escalation ever in the number of people being forced from their homes”.[2] The number of people in flight has grown steadily over the last four years to the point that there are more than 65 million people forcibly displaced from their homes, a level not seen since the Second World War.

Numbers say a lot, but they don’t tell us everything. They don’t tell us about traumatic journeys, about the anguish of taking impossible risks and navigating complex networks of saviors and swindlers.[3] They say nothing of the despair endured by the internally displaced whose needs get overlooked.[4]

As a teen, I was highly influenced by the writings of the moral philosopher Peter Singer. His book “Animal Liberation” was unlike anything I had read. [5] Singer validated my decision to adopt a vegetarian diet against much societal pressure. His writings also helped me to frame my understanding of the gross imbalances of wealth in the world and to view disparity as other than natural or inevitable.

Famously, Singer devised the thought experiment of a drowning child: [6]

On your way to work, you pass a small pond. … You are surprised to see a child splashing about in the pond. As you get closer, you see that it is a very young child, just a toddler, who is flailing about, unable to stay upright …. If you don’t wade in and pull him out, he seems likely to drown. Wading in is easy and safe, but you will ruin the new shoes you bought only a few days ago, and get your suit wet and muddy. What should you do?

Obviously a decent person would wade in and save the child. Singer uses the thought experiment of the drowning child to argue that those of us in affluent countries have an ethical duty to help distant strangers as we do to help those in close proximity: that distance (geographic or affective) does not justify deadly neglect. So then what of the estimated 5.9 million children who will die before reaching age five as a result of diseases that are readily and affordably prevented and treated?[7] Although Singer’s thought experiment is problematic and subject to critique,[8] it is influential and compelling.

Its parallel with the Global Migration Crisis is stark. Singer’s drowning child has drowned, is drowning.

 

Image generated by Robert Sharp using Waterlogue, after a photographs by Nilufer Demir.   http://www.robertsharp.co.uk/2015/09/05/photo-aylan-kurdi/photo-04-09-2015-22-46-39/

 

In April 2015, the humanitarian organization Médecins Sans Frontières (MSF) took the unprecedented step of launching search, rescue and medical aid operations in the Mediterranean Sea. Its aid workers quickly discovered that more was required than pulling people from the water. An MSF nurse put it best, “Their bodies tell us about the horrible things they’ve been through.”[9]

As with so many crises of humanity, humanitarian and other civil society organizations are wading in where governments refuse to tread. The humanitarian response to the Global Migration Crisis is an act of defiance and solidarity. It involves care for victims of rape and psychosocial support for survivors of detention, torture, sexual exploitation and human trafficking. While these are noble efforts, they are increasingly thwarted by official indifference, obstruction, and outright belligerence on the part of governments and anti-immigration forces.

It seems we live in an age of moral austerity.

To make sense of moral austerity, it helps to look to the social, economic and political forces that shape the realm of the possible. The prevailing dominant ideology in our social and economic lives is neoliberalism.[10] The neoliberal paradigm situates us in an era of economic austerity in the wake of the global financial crisis (of its own making). Economic austerity requires moral austerity as our governments impose deep cuts that affect the most vulnerable members of our societies while channelling trillions of our public dollars to private banks and corporations.[11] The system of imposing regressive policies on the heels of destabilizing shocks is aptly described as disaster capitalism.[12] It is a neoliberal logic that sees first to the wants of banks and corporations. Corporate hegemony doesn’t demand our compassion as it does our life savings, and thankfully morality is not finite. So instead, let’s direct our compassion to Singer’s drowning child.

On the basis of Singer’s thought experiment, this is my simple argument for providing succor to the victims of the Global Migration Crisis, for rescuing people in immediate distress, for providing medical and psychosocial care, for opening up safe routes to sanctuary, for allowing people to cross borders with or without travel documents, and for resettling people who require it.[13]

To be clear, the solution to the Global Migration Crisis will be neither medical nor charitable. We must not disassociate the crisis from broader injustices that are forcing displacement, including war and political violence, the bombing of schools, hospitals and civilians with impunity, climate crisis and ecological collapse from ruthless resource extraction and agribusiness, and what political theorists call accumulation by dispossession.[14] We can expect to see more and more drowning children in an ever expanding pond. But by exercising our compassion, supporting humanitarian and other civil society organizations, and holding our governments accountable, there may be hope yet for Singer’s drowning child and for us.

John Pringle can be reached at johndpringle@gmail.com.

You can find an additional commentary at John’s Huffington Post page: http://www.huffingtonpost.com/entry/the-worlds-your-detention-center-as-humanity-wrings_us_5919b5dee4b02d6199b2f168

_________________________

[1] http://www.unhcr.org/afr/news/latest/2016/6/5763b65a4/global-forced-displacement-hits-record-high.html Accessed 29 May 2017.

[2] http://newirin.irinnews.org/global-refugee-crisis/. Accessed 29 May 2017.

[3] Peter Tinti & Tuesday Reitano (2016). Migrant, Refugee, Smuggler, Savior. Hurst Publishers: London.

[4] http://www.internal-displacement.org/global-report/grid2017/. Accessed 29 May 2017.

[5] Peter Singer (1975). Animal Liberation: A New Ethics for Our Treatment of Animals. Random House: NY.

[6] Peter Singer (1972). Famine, Affluence and Morality. Philosophy and Public Affairs, 1(3): 229-243. See also:

http://www.nytimes.com/2009/03/11/books/chapters/chapter-life-you-could-save.html. Accessed 29 May 2017.

[7] UNICEF (2016). The State of the Word’s Children 2016: A fair chance for every child. United Nations Children’s Fund: https://www.unicef.org/publications/files/UNICEF_SOWC_2016.pdf. Accessed 31 May 2017.

[8] See for example: Scott Wiser (2011). Against shallow ponds: an argument against Singer’s approach to global poverty. Journal of Global Ethics, 7(1): http://dx.doi.org/10.1080/17449626.2010.548819

[9] http://blogs.msf.org/en/staff/blogs/moving-stories/search-and-rescue-their-bodies-tell-us-about-the-horrible-things-theyve. Accessed 30 May 2017.

[10] David Harvey (2007). A Brief History of Neoliberalism. Oxford University Press

[11] https://www.forbes.com/sites/mikecollins/2015/07/14/the-big-bank-bailout/#4b324d712d83. Accessed 31 May 2017.

[12] Naomi Klein (2007). The Shock Doctrine: The Rise of Disaster Capitalism. Random House

[13] http://www.huffingtonpost.com/entry/the-worlds-your-detention-center-as-humanity-wrings_us_5919b5dee4b02d6199b2f168. Accessed 31 May 2017.

[14] David Harvey (2004). The ‘new’ imperialism: accumulation by dispossession. Socialist Register 40: 63-87.

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Ethics and Unmet Promises: Syrian refugees healthcare in Lebanon

The New York Declaration for Refugees and Migrants, adopted by the United Nations GEneral Assembly in September 2016, stresses that root causes should be addressed “through the prevention and peaceful resolution of conflict, greater coordination of humanitarian, development and peace-building efforts, the promotion of the rule of law at the national and international levels and the protection of human rights”. The international community has thus recognized “a shared responsibility to manage large movements of refugees and migrants in humane, sensitive, compassionate and people-centered manner”.

UN Document A/71/L.1. (paragraph 11)

Refugees & Migrants and Ethical Responsibility for their Health Care:

  • It is more than simple generosity, simple charity.
  • It aims to build spaces of normalcy in the midst of what is abnormal.
  • More than offering material assistance, we aim to enable individuals to regain their rights and dignity as human beings.

Nobel Lecture by James Orbinski, Médecins Sans Frontières, Oslo, December 10, 1999

The Context

Since the start of the Syrian conflict in 2011, Lebanon has been host to incoming refugees. The UNHCR estimates 1,050,877 Syrians are now in Lebanon, amounting to 25% of the Lebanese population. Refugees are concentrated in the North and Bekaa regions, host communities that are already poor, underserved and vulnerable.[1]

The Issue

The large and constant influx of Syrian refugees into Lebanon has greatly strained the Lebanese healthcare system and economy. Many local and international NGOs, humanitarian organizations and governmental agencies are involved in providing humanitarian assistance and health services to Syrian refugees. Yet, there remain existing structures that limit refugee access to essential health care services, including poor coordination between them. The result is a rise in communicable diseases, increased risk of epidemics, suboptimal control of chronic diseases, and other health related matters.[2]

How can the Lebanese MOPH and other stakeholder organizations secure better access to essential and urgent healthcare needs of Syrian refugees?

Current Health Situation of Syrian Refugees in Lebanon

Access to Healthcare by Syrian Refugees in Lebanon

Roles and Responsibilities of the Lebanese Ministry of Public Health (MoPH)

Conclusion

It is important to promote access to Essential Health Care Services for Syrian Refugees in Lebanon and to recognize the severe shortage in financing and unmet promises by the international community. An immediate action and far greater support from the international community is needed to address the needs of refugees in Lebanon.

Recommendations for the MOPH and international aid agencies:

  1. Develop an essential package of healthcare services for Syrian refugees and Lebanese people.
  2. Develop a mechanism at the level of the government to raise funds to finance the delivery of the essential package.
  3. Expand the number of primary healthcare centers, and hospitals that are within the humanitarian sector.
  4. Developing refugee health information system through:
    • Identifying priority data needs and requirements;
    • Developing guidelines for data collection, and data use;
    • Establishing a mechanism for data monitoring, data sharing between all stakeholders including the private sector.
  5. Invest in building capacities of local infrastructure and local government (municipalities) to handle crisis situations.
  6. Explore mechanisms to increase transparency in the work including resource allocation of NGOs and other agencies in delivering health interventions.
  7. Invest in decentralizing decision making capacity at the level of the government departments to match interventions and aid to the needs of the local community.
  8. Identify research priorities on refugee health.
  9. Strengthen the stewardship function of governmental departments and having a lead organization that is capable to play a major role by coordinating and establishing effective partnerships with local and international agencies.

About the Author:

Michel Daher, MD, FACS
Professor of Surgery, Univ of Balamand
Secretary General, Lebanese National Ethics Committee
Vice-Chair, National Committee for Palliative Care
Saint George Hospital-UMC, Beirut- Lebanon
mndaher@inco.com.lb

 

Photo Credit: One-month-old baby boy, Walid, is comforted by his mother after a check-up provided by UK aid at a Save the Children clinic in Lebanon’s Bekaa Valley. Walid’s mum was worried about him but the diagnosis was just that’s he suffering from colic, which will hopefully get better by itself in time. The UK is supporting Save the Children to provide access to primary healthcare for thousands of Syrian refugee children in Lebanon, as well as ensuring that hundreds of pregnant Syrian women have access to anti-natal care. To find out more about how the UK is responding to the humanitarian crisis in Syria and its neighbouring countries, please see:www.gov.uk/government/news/syria-the-latest-updates-on-uk… Picture: Russell Watkins/Department for International Development

 

[1] (UNHCR, 2014 – WB&UN, 2013; UNHCR. 2015. Syria Regional Refugee Response http://data.unhcr.org/syrianrefugees/regional.php)

[2] (Refaat & Mohanna, 2013)