Ethics & Engagement across the Wellcome Trust Major Overseas Programmes
2019 Bursary Fellows
Jane Kahindi, Engaging communities about biobanking: developing and evaluating an animation video to engage the lay public: We intend to use a participatory approach in developing a 10-minute animation video; and evaluating its effectiveness in engaging communities about biobanking. Evaluation will involve qualitative and quantitative approaches where data collection will include documentation of the process of developing the animation video, observations, Focus Group Discussions, In-Depth Interviews, pre- and post-surveys with a range of stakeholders including community members.
Chi Phuong Le, Stakeholder experiences and perspectives of integrating qualitative research into clinical settings in Ho Chi Minh City: At OUCRU Vietnam, clinical trials and studies are now beginning to integrate more qualitative research within or alongside clinical protocols. We will conduct this study to provide an insight into stakeholder experiences and perspectives of integrating qualitative research into clinical trials and studies within hospital settings.
2018 Bursary Fellows
Nguyen Thi Hong Yen, Exploring informed consent: practices and perceptions of the informed consent process in a clinical trials setting in Vietnam: Little research on the IC process has been conducted in Vietnam. Therefore, we designed this qualitative study employing multiple research methodologies including document review, direct observation, interview, and focus group discussion to have better understanding of the process in our specific context and the expectations both healthcare staff and participants want from such process.
Htet Htet Aung: Ethical Challenges Related to Short Course Tenofovir to Prevent Mother to Child Transmission of Hepatitis B in Myanmar: We aim to explore the ethical and practical challenges related to the use of placebo through In-depth Interviews and Focus Group Discussions among pregnant women and health care providers.
Busisiwe Nkosi: Body-mapping: Exploring perspectives of privacy and confidentiality among young people and fieldworkers in mAfrica study in a rural district, South Africa : Focusing on young people participating in the mAfrica study, as well as fieldworkers providing HIV kits, the proposed study will explore complexities resulting from linkages between personal understandings of privacy, perceptions of trust, and risk, agency, and context by providing an ethical lens on the implementation of the M-Africa study.
Wezzie Nyapigoti: To explore views of research stakeholders about appropriate compensation and benefits for study participation in Malawi
The aim of this study is to explore views of research stakeholders about appropriate compensation and benefits for study participation in Malawi and to identify strategies that promote fair compensation and benefit sharing with research stakeholders. The study will follow a qualitative design and data will be collected using semi-structured interviews and focus group discussions.
Nothando Ngwenya: The ethics of post-trial access in international research and potential for moral hazard: arguments for different responsibilities
We are interested in the ethical aspect and practicalities of implementing Helsinki guidelines when a trial ends and will use the recently concluded HIV Treatment as Prevention trial as a case study. The trial examined the hypothesis that home-based HIV testing of all individuals in the community followed by immediate antiretroviral therapy (ART) initiation regardless of CD4 count would result in reduced HIV incidence in that community.
Yemisrach Zewdie Seralegne: Exploring the experiences and challenges faced by IRB members in Addis Ababa, Ethiopia: This pilot study will assess the experiences and challenges of IRB members in Addis Ababa. We will address their experiences and challenges with respect to trainings obtained and the benefit of training in the review process of study proposal. As well, this study will explore the experiences of members in different types of research proposal.
2017 Bursary Fellows
Ha Nguyen Thanh: Issues surrounding uptake of maternal and neonatal vaccinations in ethnic communities in Dak Lak province, Viet Nam: We propose a project to understand, in detail, attitudes and perceptions surrounding
vaccination uptake in a community at high risk of low vaccination uptake by both quantitative surveys and qualitative interviews and group discussions.
Chimwemwe Phiri: MSc in Visual, Material and Museum Anthropology: Chimwemwe's GHBN bursary supports her in her studies for an MSc in Visual, Material and Museum Anthropology with the University of Oxford. She will attend lectures and seminars on current practice and themes in visual, material and museum anthropology as well as a research methods class.
Nou Sanann and Tom Peto: Why are forests foci of malaria transmission in western Cambodia, and what can be done to protect forest workers and prevent forest-acquired malaria undermining malaria elimination in neighbouring villages? :This study aims to understand what goes on in forests in western Cambodia in order to assist the design of acceptable and effective interventions targeted at forest visitors.
This study will assess the acceptability and feasibility of TME and analyze the contribution of community engagement (CE) and other factors to the success of TME to date.
Mackwellings Phiri: Perspectives of research stakeholders on sharing of unanonymised participant information between research studies: The project looks at sharing of unanonymised data. The primary research objective of this project is to understand what research stakeholders’ perspectives are about research studies sharing and accessing participants’ data that contains identification details.
Alex Hinga: Describing Ethically Important Features of Health and Demographic Surveillance Systems in sub-Saharan Africa: Context, Functioning and History: This bursary project is nested within a larger PHD study exploring ethical issues for HDSS in SSA using a case study methodology. The project aims to describe the similarities and differences between HDSS sites in terms of their history, functioning and context.
Mitsunge Gondwe and Neema Toto: The challenges of achieving informed consent among paediatric research participants in hospital-based research in urban Malawi: Mitsunge Gondwe is a new GHBN Fellow this year, who has taken over this project, originally begun in 2013 by Neema Toto. The informed consent process remains a contentious issue in health research in resource limited settings. No research work has been done in Malawi to assess understanding of participants on informed consent process in different study contexts. This prospective project explores the challenges arising in obtaining informed consent in Paediatric observational and interventional research in general and acute/emergency hospital setting at Queen Elizabeth Central Hospital in Blantyre, Malawi.
2016 Bursary Fellows
The aim of this study is to investigate health practitioners concerns around the impact of the consent process for (a) surgical procedures, (b) recruiting patients who are awaiting surgical procedures into clinical research studies and (c) factors surrounding the recruitment process that may influence a patient’s decision to participate in either option a or b above from a health care practitioners perspective.
This project aims to strengthen the processes of translating research terminologies used in ICFs for medical research in Kilifi Kenya. This may lead to high quality translation of ICFs, improved consent administration, and ultimately contribute to ethical conduct of health research at KEMRI Wellcome Trust Research Programme (KWTRP).
Kate Gooding: Post doctoral research associate at the Malawi-Liverpool-Wellcome Trust Clinical Research Programme: Kate Gooding is based in MLW’s Behaviour and Health Group. Part of her role involves close collaboration with the Science Communication team. Together with the team manager and M&E officer, she is working to strengthen monitoring and evaluation of MLW's community and public engagement activities, to support research on emerging engagement issues, and to ensure that plans for engagement are informed by clear goals and evidence.
Sreymom Pol: Exploring and Understanding the Community's Attitudes toward Research Ethics in Cambodia: The aim of the study is to explore community attitudes towards research and its ethics in Cambodia by interpreting what community members know about research and what research means for them.
Kyaw Myo Tun: Ethical issues in recruitment of teenagers and young people in clinical research in Myanmar: This research project will focus on the ethical issues in relation to recruitment of teenagers and young people in clinical research in Myanmar. In Myanmar, there is a lack of research in young people and there is a need to develop guidance suited to this particular context.
2015 Bursary Fellows
Ms Nguyen Thi Thanh Thuy: Senior Research Associate in Ethics and Policy at the Oxford University Clinical Research Unit (OUCRU): The primary research Ms Nguyen will focus on over the next year includes ethical aspects of collaborative research, such as informed consent, benefits and compensation, and the translation and dissemination of research results.
Ms Bernadette Kombo: 'Facing our Fears': Facilitated film viewings as a community engagement tool in research involving MSM in Kenya: The main aim of the study is to explore people’s perspective on involving Men who have Sex with other Men (MSM) in HIV prevention research and learn from the stakeholders how Facilitated Film Viewings (FFV) as an approach can be integrated in the existing community engagement strategies.
Mr Elvis Moyo: Exploring and addressing challenges to improve the ethical practice for Fieldworkers in medical research at Malawi Liverpool Wellcome Trust: The main aim of the study is to identify ethical challenges faced by FW as they conduct medical research, and to ultimately improve ethical research practice among FW at the institution. We will observe FW interactions with research participants and community members to have an in-depth understanding of the challenges faced. In-depth interviews with key stakeholders will also be carried out. Findings from this study will improve the conduct of ethical research among FW in Malawi.
2014 Bursary Fellows
Mr Mphatso Mwapasa: Bioethics of biometrics within the health care system and medical research in Malawi: The main aim of the study is to explore the bioethics of integrating biometrics within the health care system and in medical research in Malawi through the perceptions of policy makers and communities. This project asks the question: What are the current perceptions of policy makers and communities in response to the integration of biometrics within the health care system and in medical research in Malawi?
Dr Claudia Turner: Ethical considerations, perceptions, beliefs and practices in the neonatal period in rural Cambodia: This study seeks to examine ethics, beliefs, perceptions and practices in the healthcare of neonates. Although there has been a reduction in the number of deaths in children less than five years of age in low and middle income countries, this rate of reduction has not included those in the neonatal period (infants <four weeks of age). Understanding community practice and beliefs is a vital step in improving neonatal outcomes.
Dr Lindsey Reynolds, Miliswa Magongo, and Ncengani Mthethwa: ‘Representing and intervening’: The ethical and social dimensions of divergent forms of representation in the context of long-term biomedical research in South Africa: This research project is focused on the dynamics of divergent forms of representation in the context of long-term biomedical research in South Africa. More specifically, the project aims to explore the ways in which a variety of actors involved in the research activities of the Africa Centre for Population and Health Studies are asked to represent the Centre to the ‘community’ in which the Centre’s research is based and/or to represent the ‘community’ to the Centre leadership, scientific staff, funders, and other stakeholders.
Farirai Mutenherwa: Ethical issues in the use of molecular epidemiological techniques, a literature review and expert opinion analysis: This study explores the ethical issues associated with linking pathogen data to HIV infections, in particular, the use of phylogenetic analysis results as evidence to prove HIV transmission. The overall objective of this study is to develop an ethics framework that will guide the use of molecular epidemiological approaches in South Africa and serve as a resource for other countries involved in similar work.
2013 Bursary Fellows
Miss Neema Mtunthama: The challenges of achieving informed consent among paediatric research participants in hospital-based research in urban Malawi: Informed consent process remains a contentious issue in health research in resource limited settings. No research work has been done in Malawi to assess understanding of participants on informed consent process in different study contexts. This prospective project explores the challenges arising in obtaining informed consent in Paediatric observational and interventional research in general and acute/emergency hospital setting at Queen Elizabeth Central Hospital in Blantyre, Malawi.
Mr Francis Kombe: Strengthening training of front-line staff as a means to enhance community engagement: The proposed project is part of a wider project that aims to find ways in which fieldworkers (frontline workers) involved in research activities can be effectively supported to handle practical and ethical challenges they encounter in their roles.
Phaik Yeong Cheah: Consent and assent in paediatric research - recommendations for low-income settings: Although there has been much discussion in the literature about consent and assent in paediatric research, little has been written about the unique challenges in low-income settings. There are additional considerations in these difficult and complex environments where research is most needed and the disease burden is high. This project will examine this area and suggest recommendations for consent and assent in children in low-income settings.
This project will be a collaborative project among OUCRU-VN and many other hospitals across the country such as the Hospital for Tropical Disease, Children’s hospital No.1, Children’s hospital No.2 and the National Hospital for Tropical Disease to gain a good knowledge on what are the essential details and information for informed consent forms for non-clinical trials.
2012 Bursary Fellows
Dr Khin Maung Lwin: Identifying the Success Indicators of the Tak Province Border Community Ethics Advisory Board: This project, which is the first of the series of studies, is to answer the following question: “What are the key success indicators of the T-CAB?" The success will be measured against expectations of key stakeholders. We will explore the expectations of key stakeholders includíng investigators, clinic staff, local communities by using appropriate qualitative research methods eg FGD,IDI, observation. Based on these findings, a bespoke evaluation tool will be developed and piloted.
Ms Maureen Njue: Incorporating the views of community members into guidelines on benefits to participants at the KEMRI Wellcome Trust Unit in Kilifi, Kenya: This project aims to first explore the perceptions of community members in Kilifi regarding what’s perceived as good practice for planning benefits to participants across the different types of research; and how these views can be incorporated into guidelines for researchers on planning for benefits in studies. Secondly, it aims to explore methods for community consultation focusing on questions about benefits.
Ms Tran Thi Thanh Phuong: Cost effectiveness analysis of different dengue interventions and its application for policy evaluation and to help guide equitable access to health care: The focus of my research is on the Health Economics Challenges facing Viet Nam including work on Health Insurance, Government Provision and Payment Models for Vaccines, and Infectious Diseases. My research will also explore the broader ethical and political issues surrounding the application of health economics. Health Economics is currently of great importance in Viet Nam and I hope that through my PhD I can contribute to the growing debate about the way health provision in Viet Nam can be afforded in a sustainable and equitable way.
Mr Rodrick Sambakunsi: How are messages about HIV self-testing reproduced as they travel through communites?: This project aims at exploring how messages about HIV self-testing travel through community networks. The research will be conducted in and around urban Blantyre where HIV/TB intervention is currently taking place. Participants will be traced through a series of social networks, taking three main starting points to identify an initial sample frame. We hope that this research study will provide an opportunity to further develop the MLW communication of science programme, linking our strengths in the practice of community engagement with our strengths in social science research.
Dr. Lisa Jane White: Phoum Peet: Promoting Village Health in Cambodia through Community Engagement: The Village Malaria Worker (VMW) scheme in Cambodia currently covers about 30% of the villages currently at risk of malaria. In villages not yet covered, people are still dying of malaria and other preventable diseases. In this project we aim to set up a sponsorship scheme to recruit individual international sponsors to fund individual VMWs and extend the national scheme. We will develop novel smartphone technology and a dedicated website to enhance communication and reporting. We will design and carry out a study to explore the ethical issues arising from the role of the new VMWs.
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