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Ethics & Engagement across the Wellcome Trust Major Overseas Programmes

Highlights from the 2015 GHBN Summer School - Ho Chi Minh City, Viet Nam, 1-5th June 2015

Photo by Mr Duy of OUCRU, 2015

[Please do not copy or disseminate this photo or report without permission. If you would like a full version of the summarized report below (or if you would like to distribute, or copy any part of this summary), please email dinnah.rippon[at]ethox.ox.ac.uk]

Introduction

The fourth annual Global Health Bioethics Network (GHBN) Summer School took place at the Oxford University Clinical Research Unit in Ho Chi Minh City, Viet Nam from 1-5 June, 2015. Attendance was open to all members of the Wellcome Trust Major Overseas Programmes in Kenya, Malawi, South Africa, Thailand-Laos, and Viet Nam and their partner sites, and to members of the Ethox Centre team in Oxford. Also, for the second time, external participants were invited as part of the GHBN’s expansion beyond the MOPs. Dr Bobbie Farsides of Brighton and Sussex Medical School joined the group, as did a member of one of her Networks from the Ethiopian Public Health Institute. We were also joined by a recent graduate student of the University of Oxford who was starting an internship with MORU. The GHBN is actively expanding and engaging in collaborations with other Networks and groups who are also working in the area of global health and ethics.

Although most places at the summer school were fully funded by the GHBN (Wellcome Trust Strategic Award), there were so many additional people who wished to attend that extra funding was provided by other institutions. One participant was funded by the Malaria Genomic Epidemiology Network (MalariaGEN), two participants were funded by project grants from KEMRI-WT Kilifi, one participant from the University of Oxford was self-funded, one participant was funded by MORU, and one participant from the Ethiopian Public Health Institute was funded by the BSMS Wellcome Trust Centre for Global Health Research.

Purpose and Aim of the Summer School

The aims of the Global Bioethics Network (GHBN) are:

-to promote and support ethical reflection;

-to build ethics capacity; and

-to carry out ethics research across the MOPs and beyond.

Annual Summer Schools are a key activity of the GHBN in all three of these respects. Summer Schools aim to develop capacity in ethics across the MOPs through educational activities, and to facilitate research collaboration between the MOPs ethics and community engagement teams by supporting the work of the Global Health Bioethics Network Bursary Fellows and by providing a space in which members of the five MOPs, Ethox, and other relevant partners, can discuss and plan research activities in person. In both these respects, the summer schools also aim to promote and support ethical reflection.


Participants

50 participants in total attended the summer school, making this the largest summer school ever held. 15 participants came from OUCRU in Viet Nam and its partners (including OUCRU-Nepal, the Hospital for Tropical Diseases, Children’s Hospitals Nos. 1 and 2, Viet Nam National University, and the University of Medicine and Pharmacy in Ho Chi Minh City). Six participants came from Thailand/Mae Sot/Cambodia (MORU); seven from KEMRI-WT, Kilifi; five from South Africa (the Africa Centre for Health and Population Studies); five from Malawi (MLW); and nine from the Ethox Centre. Additional participants included Dr Bobbie Farsides (Brighton and Sussex Medical School), Serebe Abay (Ethiopian Public Health Institute) and Rebecca Harvey (University of Oxford).

Delegates came from the following countries: Cambodia, Ethiopia, Kenya, Laos, Malaysia, Malawi, Myanmar, Nepal, South Africa, Thailand, the United Kingdom, and Vietnam.


Topics discussed


In advance of the summer school, participants were asked to complete a registration form in which they were invited to state their reasons for wanting to attend and their particular interests in relation to the ethics of research. In addition, early career researchers and GHBN Bursary Fellows were also asked to vote on a list of key themes relevant to the work that is carried out in all the MOPs. Voters were asked to choose their top three themes.


The top three themes voted for were:


- Ethics and collaboration (highest no. of votes)
- Responsibilities and duties
- Mothers, fathers, and children


In addition to these three themes, there were two other areas many participants said they would like to discuss:


- What is ethics and how does it arise in my work? And,
- Engaging, involving, and representing communities.


As a result, the Summer School agenda was organized around these five key themes, creating a rich and varied agenda.

A summary of what came out of the five themes

In the short presentations from the participants, a wide range of fascinating work in ethics was described. Not all of this can be captured here in this report. However, some highlights include the following:

Theme: Mothers, Fathers & Children

  • Within this theme, we heard from Nguyen Duy Phong about the complex ethical issues that arise in caring for children under 5 years old with diarrhea in a province in Viet Nam.
  • Neema Toto, a Bursary Fellow from MLW talked about autonomy and the challenges in applying informed consent in collectivist societies in Malawi, where there is a social culture around decision-making.
  • Maureen Kelley of Ethox discussed her research on the ethical issues that come up in relation to orphans and vulnerable children in research, and the need to introduce an ethics of care into research with such children.
  • Maureen Njue of KEMRI-WT shared results from her bursary project on benefits and payments guidelines in Kilifi. She mentioned the importance of considering the needs of children, their siblings, and their caretakers in Kilifi guidelines. 

Theme: Ethics and Collaboration –

  • In this theme, Dung Nguyen Thi Phuong presented some key challenges OUCRU faces as a result of the many partners they collaborate with. Many of the MOPs face these challenges, which include the question of how to balance large-scale, international multi-centre consortia science with small-scale local/regional science.
  • Rodrick Sambakunsi, a Bursary Fellow talked about how community engagement often doesn’t address add-on studies, and this can lead to difficulties. He gave the example of MLW’s Hit-TB Hard study where community sensitization meetings were conducted as part of the initial CE strategy, but add-on collaborations raised questions among community members with respect to consent, confidentiality, data-sharing, and so forth.
  • Tinofa Mutevedzi of the Africa Centre raised the question of whether collaborations are a burden or solution. Although the AC is uniquely positioned for research in HIV and TB, as well as studying health systems evaluation and impact, its rural location is a disadvantage. They try to get around this by recruiting staff through collaborations with national and international institutions. This means that scientists don’t necessarily need to be full-time employees. However, ethical issues arise from belonging to two research institutions. One often has to approach more than one REC for approval and sometimes the answers conflict and can delay implementation of research studies.
  • Tran Thi Ahn Thu of Vietnam National University talked about ethics and collaboration issues in participatory research. Her project explores perceptions and risk activities towards zoonotic infections in Viet Nam.
  • Patricia King’ori of Ethox discussed challenges in collaboration, and raised key questions, such as does the funding source shape the output of collaborations? How should division of labour within the collaboration be handled? Should global health collaborations be righting historical wrongs? Whose concerns get addressed? Who holds responsibility when things go wrong?
  • Jaruwan Tubprasert of MORU talked about the tensions between local versus central ethics committees in Thailand, and the numerous ways in which these two processes seem at odds with each other.
  • Vicki Marsh of KEMRI-WT raised the question of whether collaborations are all about power. She described how actively KEMRI focus on in-depth community engagement and aim to maximise representativeness. They encourage open, informed, and public-spirited debate. In-depth community collaboration in Kilifi is a foundational concept, and is absolutely key to all the research they do.

Theme: Responsibilities and duties –

  • Nguyen Thi Dan Thanh of OUCRU talked about a project that focused specifically on the importance of relationships in research. The aim is to understand motivations for participants and partners to engage in biomedical research. The project raised multiple ethical challenges, but also showed that there were many ways to improve the way researchers and health care workers conducted their responsibilities and duties.
  • Farirai Mutenherwa, a Bursary Fellow from the Africa Centre focused on responsibilities and duties arising within his bursary project, which explores ethical issues in the use of molecular epidemiological techniques. Farirai highlighted the importance of protecting the rights and interests of his research participants, and abiding by the ethical principles of respect for autonomy, beneficence, and justice.
  • Elvis Moyo of MLW, also a Bursary Fellow, talked about the interface between CE practice and social responsibilities. He shared some of the dilemmas that arise in his work, which include the community’s limited knowledge about medical research, exposure to a wide range of incentives, not knowing when is the right time to do community engagement and the need to balance expectations.
  • Mayfong Mayxay of MORU/LOMWRU talked about his – sometimes conflicting- responsibilities and duties in relation to ethical issues in his work. He revealed the tensions he had to balance between being a local leader of a research team, an investigator, a clinician, and all the competing duties and responsibilities that came with these different positions.
  • Vibian Angwenyi of KEMRI talked about responsibilities and duties for HDSS (Health Demographic Surveillance System) researchers in Kilifi. She mentioned that a key difficulty for researchers using HDSS platforms is that there is a blurred boundary between what is considered research versus routine practice or surveillance. Ethical challenges for HDSS researchers include the lack of a regulatory framework and complex consent processes.
  • Noni Mumba of KEMRI talked about the community liaison group at KEMRI and their duties and responsibilities. She asked some key questions, such as what roles have we outlined for KEMRI community representatives? Are they truly independent? They keep asking to do more – what more should they do? What are our fears?
  • Ncengani Mthethwa of the Africa Centre focused on the duties and responsibilities of the Community Engagement Unit at the Africa Centre, highlighting both the external and internal challenges they face.
  • Dorcas Kamuya of Ethox & KEMRI discussed the duties and responsibilities that fall on the shoulders of frontline research staff. They have to balance researcher interests, community interests and their own interests. She also shared ways in which frontline research staff can be supported to undertake their roles ethically, and emphasised the importance of creating ‘deliberative spaces’ as an intervention to support ethical practice among frontline staff in developing countries.
  • Niva Joshi of OUCRU Nepal discussed the duties and responsibilities that arise in her work, which focuses on finding out the factors that affect neonatal sepsis in the intensive care unit of Patan hospital.
  • Doan Thi Le Binh of Children’s Hospital 2 briefed us on her research, which involves looking at capillary lead levels in paediatric patients from 0-8 years of age. Her key question was – is she fulfilling her duties and responsibilities when it comes to informed consent? She highlighted the numerous barriers she faces to effective informed consent – including age, low health care literacy, language and culture issues, confusion about the consent process, and other misunderstandings.

Theme: How does ethics arise for me? –

  • Thuy Nguyen Thi Thanh, a Bursary Fellow from OUCRU talked about this theme in the context of her research project on informed consent in Viet Nam. The results of her bursary project show that participants were afraid of being treated like lab rats, didn’t like the word ‘research’, and did not like reading lengthy documents or signing them.
  • Participants gave examples of numerous other ways in which ethics arises in their work, including:

- Working with vulnerable communities who confuse research with service delivery, and wondering what kind of community engagement strategies would be most appropriate in such places (Nompilo Myeni, South Africa).

- In a project that is researching health ethics perception, beliefs and practices at the time of delivery and in the neonatal period in rural Cambodia, we learned that fraudulent activities hinder participation in studies and cause misunderstanding about giving consent for research (Sreymom Pol of COMRU).

- Angeliki Kerasidou of Ethox talked about ethics as a ‘critical friend.’ She provided an overview of what is ethics, and how to study ethics, as well as the role of ethics in research, concluding that one key role of ethics is to act as a ‘critical friend’ - to ask the difficult questions, challenge biomedical researchers, and assist researchers in achieving the social goal of research, amongst other roles.

- Regina Makwinja of MLW briefed us on some of the diverse ethical issues that arise in various MLW projects, such as the radio project, and the exhibition project at MLW. She highlighted the need for constant reminders on confidentiality, and removing names from data.

- Mike Parker of Ethox focused on the question of ‘what is ethics for me’? He discussed the importance of principles and context, and the value of ethics for research.

-Salim Mwalukore of KEMRI raised the issue of ethical challenges that arise when carrying out community awareness activities, and liaising with leaders and stakeholders. He talked about the importance of frontline staff training, and community consultation which focuses on creating awareness and listening and responding to concerns.

-Serebe Abay of the Ethiopian Public Health Institution talked about his research on community-based qualitative rapid ethical assessment on HPV. He raised the challenges of obtaining informed consent and talked about how in countries with so many ethnicities like Ethiopia, what the researcher assumes may be different from the practical reality on the ground.

Theme: Engaging, representing and involving

  • Kyaw Myo Tun of MOCRU (Myanmar Oxford Clinical Research Unit), talked about their Targeted Malaria Treatment project, where community engagement is essential. His work in community engagement includes games, community meetings, and mobile clinics. Challenges include villagers refusing to take part (due to fear or mistrust), armed groups, and other campaigns happening in the same area.
  • Bernadette Kombo of KEMRI talked about using facilitated film viewings as a community engagement tool in research involving MSM.
  • Mary Chambers of OUCRU asked the question - are community-led research agendas the ideal? She shared the experience of participation in agenda setting in Viet Nam, where they have a number of community-led social science research projects running.
  • Salla Sariola of Ethox presented her plans to put together an edited volume that explores critical issues in community engagement. She invited all participants to think about submitting chapters for such a book.
  • Deborah Nyirenda of MLW talked about her PhD research project which is an examination of the role of CABs to represent community members in medical research. She asked the question: are we engaging with the community, or just legitimizing the researchers’ agenda?
  • Lindsey Reynolds, a Bursary Fellow from the Africa Centre, talked briefly about her bursary project which focuses on the ethical and social dimensions of representation in health research. She and her collaborators are exploring the ways in which actors involved in the research activities of the AC are asked to represent the centre to the ‘community’, and the community to the centre leadership scientific staff, funders and stakeholders.

A summary of what was learned at the agenda-setting sessions


As mentioned before, in contrast to the short, thematic presentations, the ‘agenda-setting’ lectures at the Summer School were longer (30 mins) and focused on thinking about what the future holds. These lectures attracted a large audience from OUCRU and its partner institutions.

Susan Bull of Ethox gave a talk titled ‘the future of research ethics – a research agenda’. As part of her talk, Dr Bull asked several key questions such as: what are ethical best practices in research? What additional responsibilities may researchers and research institutions have? And what additional interests of key stakeholders in research may we wish to promote? She also gave an overview of the data-sharing project, which focused on views about sharing individual level data from clinical and public health research in low and middle income settings. Results of the project reveal that everyone saw value in data sharing. 

Laura Merson of OUCRU focused on Ebola and asked the question “what ethics research and input are needed?” She outlined a brief history of the disease, and the numerous challenges, including the slowness of the international response and the lack of local health care personnel. She also gave a summary of the ethics issues that arose in relation to the WHO permitting experimental treatments to be used in the outbreak, and the disputes that emerged between various groups conducting the trials that were to go ahead.

Sassy Molyneux of KEMRI-WT talked about researchers’ duties and responsibilities from the point of view of accountability. Key priorities for future research include: how to evaluate community engagement; providing frontline staff with more training and support; and understanding the fact that different organizations and studies present different responsibilities, issues and challenges regarding community engagement. 

Project Development Groups


For the duration of the Summer School week, groups of participants worked together to develop a project proposal on a research topic that would be relevant to the work of the MOPs. These groups contained individuals from each MOP, and were a good mix of senior and junior staff. The seven groups came up with an excellent list of diverse projects. 

At the end of the week, each group presented their project proposal to a ‘panel of judges’ made up of Mike Parker, Mary Chambers and Louise Thwaites. The panel provided each group with detailed feedback on their proposals and recommended ways to move forward. Participants took this exercise very seriously and many said they wished to continue with development of their proposals.

OUCRU ethics clinic

The Summer School held an ‘ethics clinic’, which turned out to be highly popular. Between 8-10 scientists, researchers and doctors working either at OUCRU or in partnership with OUCRU gave short, 10-min presentations on various ethical challenges that have arisen in their work. Some of these challenges included questions such as:
- What do you do when a participant refuses to consent to enrol in a research trial?
- What do you do when you think a participant in a trial is purposefully making themselves (or their child) ill in order to get access to services or payment from the researchers?
- What do you do when you think that your intervention might actually lead to more difficulties for the community, even if it saves lives?
Discussion among the participants and the presenters was interesting and spirited. Many of the participants said that in future they would like more sessions like this, with more time to provide ethical advice to the presenters.

Poster competition


For the first time, the Summer School hosted a poster competition. There were 10 posters submitted in total (1 from Ethiopia, 1 from South Africa, 4 from Malawi, 1 from Kenya, 1 from Cambodia, and 2 from Viet Nam). The posters were displayed in the meeting room for the entire duration of the Summer School. Individual feedback was provided to each poster author on their poster, and the Summer School participants were also asked to vote for their favourite poster. The winner of the poster competition was Elvis Moyo from MLW, Malawi. His poster featured a summary of his bursary project, which explores the ethical challenges faced by fieldworkers at MLW.

Site visits

Voluntary tours of the Hospital for Tropical Diseases were provided by OUCRU staff. These were fascinating and showed a glimpse of life in hospital wards. We had the opportunity to speak to doctors and get a sense of the many varied illnesses and challenges faced by doctors who work on tropical diseases. It provided good insight into the urban environment in which OUCRU staff and scientists work.

Evaluations


At the end of the Summer School, evaluation questionnaires were handed out to all participants present.

In summary, the evaluations suggest that participants found the Summer School useful, inspiring, and a great deal of fun.

• The most popular themes at the Summer School were the ‘ethics and collaborations’ theme, and the ‘what is ethics and how does it arise in my work?’ theme – with 72% finding each of these themes useful.


• Among the specific sessions, the two most popular sessions at the Summer School were the project development sessions and the panel session on ‘how does ethics arise for me in my work?’, both of which were found most useful by 67% of respondents.


• When respondents described their thoughts on the sessions and themes, many said that the themed sessions worked really well and they learned a lot from the sessions in each theme. Several people said they liked the short presentations, which made everything more lively and participatory. Others pointed out the usefulness of the OUCRU ethics clinic, and said they wished more time had been allocated to it. Several participants also pointed out that the project development sessions had worked really well and were very enjoyable.


• Question 4 on the evaluation asked participants to specifically share their thoughts on the poster competition and the project development sessions. Here, respondents unanimously agreed that both were very useful. Several asked for the poster competition to continue in future years in order to allow participants to become better at designing and creating posters. One respondent said: “The project development group work was very important on two fronts; 1) it provides focused networking and possibilities of future collaborations between group members; 2) and provides invaluable practice and experience to developing research proposals.” 


• To the question “what, for you, is the most important output of the summer school?” there were numerous responses. Respondents’ outputs can be grouped into three main areas:


a. Relationships/people & networking: many respondents stated that the network itself and the bonding between people was an important output in and of itself. At least 12 people highlighted this importance of networking and collaboration.


b. Ideas: This was similar to the answers respondents gave last year. Many talked about the new ideas and the motivation they felt as a result of the summer school; the new insight they’d gained, and the inspiration they felt about cross-MOP projects.


c. Knowledge and perspectives: this was a subject that also received a lot of mention. Respondents talked about the new perspectives gained from thinking about their work from a different angle (as a result of the themes), and the opportunity to be exposed to critical thinking about ethics. Many people highlighted the benefits of the project development groups and the feedback they received on their projects.

• To the question “was there anything missing from the summer school”, many said ‘no’. However, several respondents raised some good issues. These included: a request for a critical friend (‘critical friends’ had only been assigned to bursary fellows, but several other participants said they would have benefitted from a friend too); a request for more background and theory on ethics and methods for junior staff (one person suggested a pre-summer school educational session); more down time; better-managed Q&A sessions; a proper conclusion/summary to each session or theme; fewer individual presentations & more working groups; more time for ice breakers & introductions; more time for the ethics clinic case studies; more time for free networking; and a session on balancing risks and benefits when conducting research.


• 35 people answered the question ‘has the Summer School made you think differently about ethics?’, and they all said yes. Many emphasised the impact the Summer School had made on their work, and the fact that it had allowed them the space to reflect on many aspects of their work. Some quotes include:
o Yes, indeed, I now look at ethics as something that is not static, and that depends on context.
o [It has shown me] the need to be more reflective about procedures, and the need for training for researchers.
o It will impact my work and I will think about ethical problems when I do clinical research.
o I realise more and more that ethics is the line I want to take. It’s exciting. Thinking of new ideas that I would like to follow up.
o It has made me realise that I do not want to pursue ethics research as a career, but that I would like to remain involved with it, and appreciate the importance of it such that I will incorporate it into all the projects I run.
o Yes, attending the summer school over the last years and participating in the network has expanded my understanding of and interest in ethics, as we move beyond thinking of it as about sets of guidelines and rules and procedures like consent forms only and rather see it as embedded in everyday activities in specific contexts.


• Finally, there was a lot of praise for the summer school in general:
o Everything was extremely well organized. I felt that we were incredibly well prepared with all the potential difficulties ironed out for us in advance! Not just in order for us to attend the meeting and to make the summer school run smoothly and effectively, but also to make sure we had a great time here in Ho Chi Minh City. Thank you so much!
o Very much enjoy especially practical approach and learn from ‘normative’ approach.
o The logistics information was excellent. The hotel is good. The food is new of course.
o Generally, I’ve enjoyed this year’s summer school most! The organization, content, structure, etc., were marvellous. Only thing to improve is the time of notifications for poster, other presentations.
o Well organized, on time, and flexible.
o It was a great week. Everything was perfect.
o Really well organized.


• Of course there were also suggestions for improvement. Some final constructive points that people raised were:
o [Regarding themes for next year] add other issues, such as ‘good ethical practices’, ‘authors and co-authors’, ‘conflict of interest’.
o Possibly some more icebreaking sessions on the first day as there are many new members and it was difficult to understand who everyone was at first.
o For the health of participants (since we are a health research group) I think we might try to make a bit of time for some outdoor/physical activities. It would help to keep people’s energies going all week.
o It would be great if we were facilitated to examine issues across our MOPs.
o More room for small group discussions with the help of facilitators on specific topics plus wrap-up and feedback.
o There were a few ideas/plans that were raised at the last Summer School that I wished we’d had space to come back to this year.

Despite this list of areas for improvement, in general, respondents were overwhelmingly positive in their evaluations and in their comments directly to us. As a result, we can feel proud. The 2015 Summer School was a success, and we look forward to seeing what comes out of it.

At the end of the summer school, Certificates of Attendance were presented to each participant.

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