Ethics & Engagement across the Wellcome Trust Major Overseas Programmes
After an unexpected hiatus, MOPs NEWS updates are back!
Below, please find summaries of all the fantastic ethics and CE projects that have been taking place around the MOPs in the past 12 months. If you have any information you would like to add, please don't hesitate to get in touch with me at: firstname.lastname@example.org
(First, ethics-related projects are summarised at each MOP. For each MOPs' work in CE, please scroll down)
New and interesting work is taking place in the area of balancing multiple accountability responsibilities for frontline staff. Different questions are being explored including: what is accountability? What are the realities of internal accountability? What are the challenges of accountability? How do frontline health providers and researchers in sub-Saharan Africa balance accountability requirements to funders, managers, reviewers and communities? In addition, work is also on-going in the area of study benefits and payments. Different phases of community consultation have been on-going in Kilifi, and staff at KEMRI are now interested in moving beyond a descriptive analysis. New research aims to carry out a normative analysis into this area and truly explore the issues around whether benefits can be too many or too few.
MORU and the Thai-Burma Border
Research is taking place by bursary fellows on the subjects of assent and consent in paediatric research, as well as in the area of evaluating a CAB on the Thai-Burma border. Plans are also underway to establish, design and train a new ethics committee located in Karen state on the Thai-Burma border: the Mu Traw District Karen Ethics Committee.
New research has begun on the subject of ethical considerations, perceptions, beliefs and practices in the neonatal period in rural Cambodia.The aim of this project is to record the beliefs and interpretations of illness and death in neonates that are held by a cross section of the community in rural Cambodia. A secondary objective is to explore the ethical issues faced by parents and other stakeholders regarding seeking health care in the new-born period, and to inform future studies on CE for the reduction of neonatal morbidity and mortality. The hope is that understanding community practice and beliefs will be a vital step in improving neonatal outcomes.
MLW - Malawi
MLW is making huge strides in integrating social science, community engagement, and bioethics. The social science programme is currently looking at: the impacts of self-testing technologies (how do novel home-based medical technologies contribute to increasing engagement with preventative and curative health interventions?); health seeking and health service engagement (asking the question: how do people respond to illness? What factors influence decisions around health seeking? How do you improve health engagement through intervention?); and community engagement research and bioethics (including the question: why do community engagement? How does community engagement benefit health?). Researchers at MLW are also considering questions such as: what defines ethical health research practice, and how do you use science to improve practice, including at the policy level? A new MLW PhD student (Deborah) is studying the purpose, benefits, and relevance of CE. By virtue of an ethnographic study using a series of case studies, the student will carry out a mapping of CE activities at MLW to assess the benefits and relevance of existing community engagement strategies among different stakeholders, with the ultimate aim of developing guidelines for improving community engagement practice at MLW and in Malawi.
OUCRU Viet Nam
Much is happening in Viet Nam in the area of public engagement. There are various community-driven projects, including the Place of Change project and the Health in the Backyard project. The objectives of these projects are to gain a deeper understanding of the community’s opinions, perceptions, and experiences around health themes and issues in Vietnam. Digital storytelling is involved in these projects. It includes 2-3 minute 1st person films, which interweave personal and health stories. There have been ethical challenges of course, such as making sure participants understand the consent forms, issues around benefits and how much participants should be paid, political issues, as well as the need to find suitable non-government locations to carry out these projects in order to strengthen trust between the research team and the communities.
Africa Centre, South Africa
There is much on-going work at the Africa Centre in the realm of community and public engagement, as well as a new bursary project. The focus of this bursary project will be on the dynamics of divergent forms of representation in the context of health research. The aim is to explore the ways in which actors involved in the research activities of the Africa Centre are asked to represent: a) the Centre to the community in which the Centre’s research is based; and b) the Community to the Centre leadership, scientific staff, funders, and other stakeholders. The study will consist of individual and focus group interviews. In addition to the bursary research project, other capacity-building activities will take place at the Africa Centre over the next year, including a reading and research group on ethics, ethnography, and engagement, workshops with the Community Engagement Unit and scientific staff, the development of future research, and the building of a social science data ‘bank’.
ETHOX, University of Oxford
Work is rapidly developing at Ethox in the areas of research in epidemics, good and bad researcher collaborations, research with hard-to-reach groups, and feedback in genomic research. Just to highlight a few examples: with respect to the project on good and bad collaborations, a main aim of the project is to understand the day-to-day moral work involved in successful research. Key features of good and bad collaborations are explored by examining interviews with scientists and researchers from different parts of the world. Conclusions thus far reveal that the conditions required for successful scientific collaboration and the production of useful, relevant, scientific knowledge involve a complex interweaving of scientific, practical and moral practices. The study on feedback in genomic research looks at MalariaGEN as a case study, and asks the question – do researchers have a moral obligation to inform participating communities of research findings? This project makes a strong case for returning results in aggregated genomics findings at a community level and the importance of sharing knowledge. The study examining research ethics in rapidly evolving infectious disease epidemics is a PhD study that is close to conclusion. So far, this study has revealed that the current research ethics review system is insufficient to respond to the complex setting of rapidly evolving epidemics, and that the nature of research ethics committees’ should be examined further within the complex web of relationships involved in research.
Public Health Data-Sharing Project: Three out of five MOPs, with the addition of the Ethox centre, researchers from SNEHA, in Mumbai, India, and researchers from the University of Kwa Zulu Natal in South Africa, are involved in a project that aims to develop ethical data sharing processes in low and middle income countries. The project is a response to the lack of empirically-grounded accounts of the ethical challenges in the development of data-release policies in low-income countries. The aim is to understand the perceptions, experiences and values of key stakeholders in low and middle income country settings; identify principles for the development of models of good data sharing practice for use in the context of research in low and middle income settings; and develop resources to support the development of appropriate data sharing policies and practice in research involving such countries. Data collection at the different sites has taken place, and following an analysis meeting in Oxford immediately after the Summer School, the project analyses will be written up, with the project expected to come to an end in December 2014.
Community Engagement across the MOPs
MLW - The CE team at MLW is commonly known as the Science Communication team. Its aim is to promote biomedical research knowledge and participation for the mutual benefit of the community and the researcher. CE activities include programme-wide engagement, as well as study specific engagement, and include science cafes, community meetings, radio, workshops, and so forth. Monitoring and evaluation of CE happens throughout. New developments in CE at MLW include the hiring of additional staff, strengthened links with the Social Science team, and the hope that CE will be included within CORE grant funding.
KEMRI WT – The community liaison group in Kilifi works closely with the health research ethics unit and the applied social science in health unit. The head of the CE team is currently updating and developing the next 5 year strategic plan for CE. The CE strategy at Kilifi has three goals: to build partnership and trust in the institution; to meet ethical and good practice guidelines; and to ensure program sustainability. Engagement happens across a wide range of groups including research communities, hospitals, schools, and policy makers. In depth consultations happen with smaller groups for specific studies, as well as broader consultations at meetings. A specific group called the KEMRI Community Representatives has been set up. It is made up of 180 elected people in 16 locations. They are consulted on both planned and on-going research. In the meantime, the community liaison group undertakes programme wide and study specific community engagement, including staff training and policy. Monitoring and evaluation takes place through community-based surveys, reviewing documentation, interviewing key people, and examining case studies. The questions that KEMRI staff face now are: how to make sense of all the data, and how to make sure the results from the CE evaluation link to practice?
Africa Centre – The Africa Centre has an extensive program in CE, with 6 CE officers, and 1 Coordinator. The CE unit is housed within research operations. The role of CE at the Africa Centre is to educate the local community about research studies and general health issues; to improve participation and retention of participants in research studies; to provide translation services; to promote ethical consent processes; to coordinate the activities of the CAB; and to build and maintain good relationships between community members, researchers, and all stakeholders involved. CE strategies include refusal verifications (visiting those who have refused to participate in research, and finding out why); road shows; community dialogues; computer classes; and radio programmes. There is also a CAB which acts as a bridge between the Africa Centre and the research community. Public engagement activities include an Art in Global Health project, and a digital story telling project which aims to gain personal insight into ART adherence barriers, using a participatory methodology (although it was a challenge to negotiate ethical approval for such a project).
MORU – Three types of community engagement activities take place here: project specific engagement (such as the Saving Brains study in Bangladesh, Tanzania, Ghana, and the Malaria elimination in hot spots project in Cambodia, Thailand, and Myanmar); programme wide or policy level engament (e.g. work with the WHO committee); and location specific engagement in Siem Reap and Mae Sot. In Mae Sot, the Tak Province Community Ethics Advisory Board is based. It is an example of formalised community engagement, and is regularly consulted. Its purpose is to ensure studies are ethical, beneficial and acceptable. The T-CAB is now 5 years old. Interviews were carried out among T-CAB members, and it was discovered that members saw the T-CAB as a place to learn, and that their role there led to other roles within the community. An evaluation of the T-CAB is on-going (Khin Maung Lwin’s bursary project). It aims to understand what other stakeholders think, if there is a better CE model, and what the major challenges are. MORU staff are also exploring the notion of ‘community’ – ethnographic fieldwork is taking place in border villages and Mae La refugee camp to understand the populations’ views on ‘community’.
OUCRU – Vietnam has an extensive program of public engagement. PE aims are to further dialogue, deepen understanding of research communities, improve understanding of clinical research, develop scientific literacy and promote scientific careers. OUCRU engages in a variety of activities, such as science cafes, science theatre (which is performed at more than 130 schools), media, a science page in children’s magazine, and a GameLAB. In research communities, projects focus on community-generated media that focus on health stories and perceptions of risk, and aim to build trust in qualitative research. OUCRU also host an art in global health residency, as well as ‘health in the backyard’ – a project that features 30 community-led media stories which give insight into the farming community’s perspective on ‘risk’. Future plans include supporting researchers to develop PE around research projects, develop a core PE focus, including capacity building for PE in Hanoi, Jakarta and Nepal, continue with theatre and science cafes, schools, media, and develop evaluation and review methods.
Community Engagement across the MOPs:
A new cross-MOP project aims to map CE approaches across the MOPs, and gauge lessons learned. Dorcas Kamuya of Ethox/KEMRI-WTspent 3-5 days visiting every MOP (except for the Africa Centre, where a visit will be planned in future), and engaged in meetings and field visits. Her visits reveal that all MOPs are interested in increasing CE and PE activities, although they do have diverse and different approaches to CE. There is innovativeness in framing and uptake. In some MOPs, CE is described as ‘operational support’; in others, it’s framed within ethics. All have dedicated staff to implement this work – some are built into the institution, others are outsourced. Goals range from building relations & trust, to understanding science, understanding health, and understanding research. All MOPs are working with the implication that intrinsically, CE is a good thing to do. There is a range of depth of engagement across the MOPs – some activities are just to inform, others are to consult, and others encourage active participation. There is also a range of communities and publics, but there is also much overlap. There are a variety of interesting and innovative approaches in CE and PE, some are unique to their context, and some are similar. In addition, there are varied levels of buy in at the institution, varied levels of research in each MOP, and varied ways in how research ethics and social science are integrated into CE activities or not. All MOPs are keen to explore ethical issues that emerge in the conduct of community engagement – such as confidentiality, the possibility of exposing participants and communities to unanticipated risks, and thinking of appropriate levels of compensation for research communities.
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