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HHE Representation at HSR2018, Liverpool

From 8-12 October the Fifth Global Symposium on Health Systems Research was held in Liverpool, UK.

The HHE research group was well represented with a presentation on the Perceptions of Ebola Virus Disease Research project by Ani Chénier entitled “Beyond Triumphalist Discourses” and a poster on the Palliative Care in Humanitarian Crisis settings.

From the study on perceptions of EVD research:

The full citation of the presentation is:

Elysée Nouvet, Ani Chénier, Oumou Bah-Sow, John Pringle, Sékou Kouyaté, Sonya de Laat, Matthew Hunt, Carrie Bernard, Lynda Redwood-Campbell, Laurie Elit, Lisa Schwartz, Beyond triumphalist discourses: West African voices on the need to recognize and sustain national research capacity in the wake of the 2014-6 Ebola epidemic. Fifth Global Symposium on Health Systems Research, 8 12 October 2018,Liverpool, UK.

ABSTRACT:

BACKGROUND The 2014-6 West African Ebola epidemic, in which a neglected disease for which no effective treatment or vaccine was yet known claimed over 11,000 lives, was a stark reminder of the essential role that health research plays within health systems.

In 2016, we launched the “Perceptions and moral experiences of research conducted during the West Africa Ebola outbreak” study. This qualitative study seeks to better understand socially-situated practices and moral experiences of research conducted in public health crisis situations, and to deepen understanding of challenges to and strategies for the ethical conduct of research during public health emergencies. It explored, among other issues, the practical and ethical complexities of international research collaborations established during the outbreak.

METHODS We conducted in-depth semi-structured interviews with 108 stakeholders directly involved in research at trial sites in Guinea, Sierra Leone, and Liberia. Participants included: 1- people having participated in clinical and persistence studies; 2- people engaged in the conduct of research (as investigators or research staff), 3- local and international research ethics board members; 4- governmental and civil society leaders. Most (91%) were from West African countries.

RESULTS Participants identified many strengths of research conducted during the outbreak, notably: 1) the success of some international partnerships (especially vaccine trials), 2) the development of innovative and adapted strategies for communicating with participants, 3) opportunities for capacity building, especially for first-time researchers, and 4) rigorous and constructive oversight by national research ethic boards.

Key challenges or failures included:  1) limited opportunities for higher-level engagement of affected-country researchers within international partnerships, 2) limited engagement of mid- or late-career researchers in the development or leadership of studies, 3) unequal access to and control over research materials like bio-samples, and 4) failures to sustainably invest in national research institutions.

CONCLUSIONS Our findings highlight the important role played by health research within local and national health systems, and complicate triumphalist discourses about the role of ‘capacity building’ in international research. During the 2014-6 West African Ebola outbreak, efforts towards capacity building were appreciated by many. Yet many also expressed frustration with the lack of investment in national research infrastructure and institutions, and the lack of opportunities for mid- and late-career researchers from affected countries. This had important practical implications, notably for the setting of research priorities that reflect needs and possibilities at the national level. Capacity must not only be built: it must also be recognized, supported, and sustained.

 From the study on palliative care in humanitarian crises:

Full reference for the poster:

de Laat, S., Matthew Hunt, Elysée Nouvet, Olive Wahoush, Kevin Bezanson, Carrie Bernard, Lynda Redwood-Campbell, Laurie Elit, Wejdan Khater, Oumou Bah Sow, Emmanuel Musoni, Rachel Yantzi, Ani Chénier , Lisa Schwartz, Dying in the Margins: Palliative Care, Humanitarian Crises and the Intersection of Global and Local Health Systems, Fifth Global Symposium on Health Systems Research, 8 12 October 2018, Liverpool, UK, Abstract ID: 3989

The poster is available below (& here as a PDF):

deLaat_ID3989_Poster_HSR2018_Final

Abstract:

OBJECTIVES There is no doubt that the primary goal of humanitarian healthcare has to be to save lives. Given the extremity of the crises in which humanitarians respond, not all lives can be saved. There is a growing acknowledgment of the role of palliative care in humanitarian healthcare. Here we present an interpretive description of the experience of palliative care in a variety of humanitarian crisis settings. Our objective is to map the diversity of those experiences and to examine the innovations and inconsistencies of global and local health systems to assess the obstacles and opportunities of these health systems in the support of palliative care during international humanitarian crises.

METHODS Four case studies were identified through stakeholder meetings and key informant interviews that represent a broad range of humanitarian emergency situations where palliative care needs arise:

  • A public health emergency: Guinea during the Ebola Crisis;
  • An acute conflict & refugee situation: Syrian refugees in Jordan;
  • A protracted refugee situation: Congolese and Burundian refugees in Rwanda; and,
  • Natural disaster situations: various geographic settings.

For each case study, in-depth, semi-structured interviews exploring experiences, needs, frustrations, and possibilities for palliative care were conducted with patients or family members of individuals with a terminal or life-threatening condition suited to palliative care. Along with interviews with crisis-affected people, local and international humanitarian healthcare providers were interviewed at each site.

RESULTS Global and local health systems—independently and intersecting with each other—emerged as a recurrent source of barriers to the provision of palliative care. Dominant themes include: global restrictions and local cultural anxieties to accessing essential medications for symptom relief; importance of culturally relevant, and locally informed, care and psychosocial support; the lack of international and local palliative care guidelines, training, and support for the provision of palliative care during international humanitarian crisis events. Changes to global health systems and improved interaction between local and international actors were cited as enablers to comprehensive palliative care provision. Palliative care was recognized as an essential component of holistic, comprehensive humanitarian healthcare, and should never act as a substitute to health system improvements for curative care.

DISCUSSION The alleviation of suffering is central to the work of humanitarian healthcare, and yet competing priorities often result in a lack of attention to palliative care. Our study presents critical insight onto the role of local and global health systems in the provision of palliative care in contexts of humanitarian crises.

 

0 comments on “Just launched: Ethics and the Closure of Humanitarian Healthcare Projects”

Just launched: Ethics and the Closure of Humanitarian Healthcare Projects

Though ethicists have examined the ethics of humanitarian priority-setting–including around the initiation of humanitarian projects–to our knowledge, none have undertaken a focused examination of the ethics of closing humanitarian projects.

It is critical to examine the ethical implications of closing projects and consider how closure can be accomplished in ways that are consistent with humanitarians’ ethical commitments including minimizing harm, being accountable, upholding impartiality and neutrality, and demonstrating respect.

In partnership with Médecins du Monde-Canada, the team is made up of Matthew Hunt, Ryoa Chung, Lisa Eckenwiler and John Pringle.

Find out more about the project here:

https://humanitarianhealthethics.net/ethics-and-the-closure-of-humanitarian-healthcare-projects/

0 comments on “What is the role of ethics in humanitarian health research?”

What is the role of ethics in humanitarian health research?

See HumEthNet members Dónal O’Mathúna, Lisa Schwartz and Matthew Hunt discuss the important role ethics plays throughout the research cycle and within public health research during a humanitarian crisis.

About the R2HC research ethics tool.

0 comments on “Post-Research Ethics Analysis (PREA): Researching Ethics in Humanitarian Research”

Post-Research Ethics Analysis (PREA): Researching Ethics in Humanitarian Research

OMathuna-Donal-2013-1.jpgArticle By Dr. Dónal O’Mathúna, PhD, Associate Professor in the School of Nursing & Human Sciences, Dublin City University, Ireland and in the College of Nursing at The Ohio State University, USA. He is the director of the Center for Disaster & Humanitarian Ethics (http://www.ge2p2.org/cdhe), and the Principal Investigator of the PREA research project investigating ethical issues encountered during humanitarian research (http://PREAportal.org).

The Post-Research Ethics Analysis (PREA) project is a funded research project with two main aims. One is to learn lessons about actual research ethics issues and innovations from health research conducted in humanitarian crises. The second is to develop a tool to facilitate and promote ethical reflection among various stakeholders in such research projects.

The project was the brain-child of Dr. Chesmal Siriwardhana, arising from his experiences in the field and his desire to ensure that research participants were respected in research. Over a number of years while at Anglia Ruskin University, and then as Associate Professor in the Department of Population Health at the London School of Hygiene & Tropical Medicine, Chesmal developed and refined the research proposal. The PREA project was successfully funded in 2016 for two years through the R2HC/ELRHA programme. Tragically, Chesmal died in 2017 in a road traffic accident just as the project was getting started. The new Principal Investigator is Dr. Dónal O’Mathúna, Associate Professor in the School of Nursing & Human Sciences at Dublin City University, Ireland and in the College of Nursing at The Ohio State University, USA.

The PREA project arose in recognition of the growth in humanitarian health research which is crucial to provide evidence to guide decision-makers in humanitarian contexts. Health research in such contexts, including during disaster relief, often involves traumatized, vulnerable populations and faces numerous ethical challenges. The PREA project was developed in response to anecdotal discussions and team members’ personal experiences that research in humanitarian crises faces difficulties with the current research ethics governance model. Attention has focused on issues of ethical approval procedures and informed consent, but anecdotal evidence suggests that other ethical challenges predominate. The PREA team is concerned that procedures focused mostly on ethics approval prior to research starting may unintentionally overlook the actual ethical challenges experienced during and after the implementation of research projects. As a result, we believe that research is needed into the actual experiences of researchers (and other stakeholders and participants) involved with humanitarian research. A manuscript arguing this case and providing justifications has been submitted for publication by members of the PREA team and will be linked here when available. In addition, tools that help facilitate ethical reflection and decision-making throughout the research process would be helpful, especially in projects involving vulnerable participants.

The PREA project will gather evidence on the actual experiences of research ethics issues by researchers, ethics committees and other stakeholders when conducting health research in humanitarian and disaster settings. This will be done by carrying out qualitative interviews in a number of humanitarian settings in countries in Asia and Africa. Local researchers will be trained to carry out the interviews and thus help facilitate the development of local research infrastructure. Currently, research ethics approval and other permissions are being obtained for the various sites. By interviewing those involved in the conduct and review of humanitarian research, insight will be gained into the actual ethical issues encountered during the research process. We are also very interested in learning about innovative ways that researchers have responded to ethical challenges so that we can learn from other teams and share best practice.

The interviews from the different sites will be analyzed qualitatively and themes identified that will be used in developing a tool to help future researchers reflect on the ethical issues in their research projects. An early version of this tool will be piloted in each of the sites where interviews will be conducted as part of a research ethics training programme to be delivered in each country. This will give local researchers an opportunity to comment on the qualitative analysis and the developing PREA tool. In this way, the PREA project aims to contribute to the promotion of ethical values and practices in the conduct of humanitarian health research. In keeping with Chesmal’s vision and passion, we hope this will help promote humanitarian health research of the highest ethical standard, and help ensure future participants and their communities are respected throughout their involvement in research.

Details about the PREA team and partner research organizations are available on our project website at http://www.preaportal.org. This portal will eventually allow researchers to post examples of ethical challenges they have faced, and ways they have developed to address them in a humanitarian context. To get in contact with us, you can email info@preaportal.org, or follow us on Twitter @Ethics_Analysis or Facebook https://www.facebook.com/EthicsAnalysis/.