1

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

 

0

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

1

Palliative Health Care in Jordan for Syrian Refugees – An HHE Report

 

Palliative Health Care in Jordan for Syrian Refugees

McMaster University’s Global Health student, Madeline McDonald completed this report within the Masters in Global Health program, under the supervision of Dr. Elysée Nouvet.

The full report is available here.

The Hashemite Kingdom of Jordan shares its northern border with the Syrian Arab Republic, and has been one of the main receiving countries of fleeing refugees since the beginning of the Syrian conflict in 2011. Currently over 650,000 Syrian refugees live in Jordan, most outside of refugee camps (Ministry of Planning and International Cooperation, 2015).

Refugees face many significant health concerns, both acute and chronic. While some are related to the conflict such as injuries and infections, non-communicable diseases claim the most Syrian lives (UNHCR, 2016b). Refugees receive care within the extensive Jordanian health system, which includes public, private and NGO facilities and services. The influx of refugees has put increased strain on both medical and human resources within the Ministry of Health in Jordan.

This paper examined factors affecting provision and accessibility of palliative care Syrian refugees. Palliative care focuses on providing relief from symptoms, pain and stress of a serious illness for patients and families (Razzak & Smith, 2014). Formal palliative care services are only available in the capital city of Amman: one in-patient palliative care unit and one home-based care service (Al Qadire et al., 2014). Jordan has no national policies on palliative care, nor palliative care education for health care providers.

Factors influencing provision and accessibility of palliative care services for refugees fall into three distinct categories:

  • Financial factors include costs to the patients and families for registration documents, user fees, medications and transportation. The health care system also incurred sizeable costs from providing care for the incoming refugees in addition to citizens.
  • Systemic and organizational factors complicate access to care through rigorous identification and registration requirements for refugees. Health care services are not evenly dispersed, nor are they equally accessible to all. Strict regulations surrounding the distribution and use of opioids restrict use for pain management.
  • Important cultural and ideological factors include a tradition of non-disclosure about poor prognosis, and the role of the family unit in decision-making and caring for patients. Many Muslims have strong religious beliefs about illness and death, which are reinforced by cultural norms. Finally, negative perceptions, misconceptions, and lack of awareness about palliative care, pain management and the use of opioids play an important role.

In conclusion, some future directions for research and policy are proposed for the national and international levels. These will support improvement and expansion of palliative care services in Jordan as a resource- and cost-effective way to provide better care for refugees and citizens alike.

PHOTOGRAPH: Syrian refugees seek medical attention at the Jordan Health Aid Society Clinic in the Zaatari refugee camp, located 10km east of Mafra, Jordan on June 04, 2014.
Photo © Dominic Chavez/World Bank   Photo ID: Jordan_EDIT_005

0

Call now open for GFBR 2017

The Global Forum on Bioethics in Research will hold a two-day meeting in Bangkok, Thailand, on 28-29 November 2017 on the theme of: the ethics of alternative clinical trial designs and methods in low- and middle- income country research.

The CALL IS NOW OPEN for:

  1. CALL FOR CASE STUDIES
  2. CALL FOR PROPOSALS ON GUIDANCE AND POLICY ISSUES
  3. CALL FOR PARTICIPANTS

See the following link for more details and information:

http://www.gfbr.global/news/call-now-open-2017-gfbr/

If you have any questions about this call please email gfbr@wellcome.ac.uk.

All applications should be sent to gfbr@wellcome.ac.uk by 21.00 BST on Tuesday 30 May 2017, in English. Please specify in the subject line whether you are applying to attend, present a case study or present on guidance or a policy issue. Applications received after the deadline will not be considered.

0

MARCH 31 CFP: Chapter contributions for volume on Humanitarian Action and Ethics

Humanitarian actors are now pressed to respond to increasingly complex crises in diverse and difficult contexts. Historically subject to multiple and often divergent interpretations, humanitarian values are now further challenged by changing conflict dynamics, globalization and its effect on shifting power relations, and a more sustained criticism of established forms of humanitarian response. Though under appreciated, ethical reflection offers an opportunity for deeper evaluation of humanitarian action, and its impact on those who endeavour to alleviate suffering and protect human dignity during, and in the aftermath of, humanitarian crises. This edited volume seeks to bring together academics and practitioners engaged in all aspects of both direct humanitarian response and scholarly humanitarian reflection, with the aim of offering a nuanced insight into the complexity of the humanitarian experience in a diversity of crisis contexts. As such, we welcome contributions related to any aspect of humanitarian action and ethics, with a particular interest in practitioner perspectives.

Call for Papers:

The volume is due to be submitted in its entirety by the 1st of August 2017. To be considered for inclusion in this volume, please kindly submit a 200-word abstract by the 31st of March to a.ahmad@ucl.ac.uk

Dr Ayesha Ahmad and Dr James Smith

0

Not to be missed! Two incredible upcoming talks hosted by McMaster History of Medicine

Title:  “The Drowned, the Saved, and the Forgotten: Genocide Survivors and the Foundations of Modern Humanitarianism” 

Speaker:   Dr. Keith Watenpaugh, Professor and Director, Human Rights Studies Program, Co-Director University of California Human Rights Collaboration, Department of Religious Studies, University of California at Davis

The talk will take place:

  • Wednesday, March 22, 2017
  • 3:00pm to 5:00pm
  • Health Sciences Building/McMaster Medical Centre (HSC) 1A6

Abstract:  All humanitarian emergencies are not created equal, or at least not constructed in the humanitarian imagination equally.  Where they happen, who is affected, the judged “worthiness” of victims and the quality of need are among the several conditions that transform how a problem of humanity becomes a problem for humanity, like genocide.  Examining the international humanitarian response to the genocide of the Ottoman Armenians (1915-1922), he argues that modern humanitarianism and genocide have a complex and intertwined history that has particular relevance to concepts like humanitarian neutrality, humanitarian governance and the role of justice in relief and what would be called now, rights-based development.

Biography:  Professor Keith David Watenpaugh studies the history, theory and practice of human rights and humanitarianism and directs the UC Davis Human Rights Studies Program. He is author of Bread From Stones: The Middle East and the Making of Modern Humanitarianism (California, 2015) and Being Modern in the Middle East (Princeton, 2006). His work has been translated into French, German, Armenian, Arabic, Turkish and Persian.

 

 

Title:  “Refugees, Human Rights, and the Syrian War” 

Speaker:   Dr. Keith Watenpaugh, Professor and Director, Human Rights Studies Program, Co-Director University of California Human Rights Collaboration, Department of Religious Studies, University of California at Davis

The talk will take place:

  • Wednesday, March 22, 2017
  • 7:30pm to 9:00pm
  • Health Sciences Building/McMaster Medical Centre (HSC) 1A1

Abstract:  With several years of fieldwork in Syria and the Middle East, Dr. Watenpaugh will trace a history of the conflict in Syria and an understanding of the situation of Syrian refugees.  He has worked with Syrian refugees in camps in Turkey and will provide some insights for health professionals working with these populations.  He will explore the legal dilemmas of global humanitarianism and will address the recent ban on Muslims and refugees in the United States.

These two talks are co-sponsored by the following:

Department of History , Orphan Sponsorship Program, McMaster Muslim Student Association,  Department of Health, Aging, Society, Humanitarian Healthcare Network, Department of Religious Studies

The History of Medicine and Medical Humanities Speaker Series is made possible by an endowment from Associated Medical Services (AMS).

For more information; please contact the Hannah Chair Dr. Ellen Amster at:  amstere@mcmaster.ca.