Ethics & Engagement across the Wellcome Trust Major Overseas Programmes
Photo by Dennis, KEMRI-WT, Kilifi, 2016
[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]
The fifth annual Global Health Bioethics Network (GHBN) Summer School was hosted by KEMRI-WT at the Mnarani Club in Kilifi, Kenya from 26-30 September, 2016.
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, to members of the Ethox Centre team in Oxford, and to members of our newest partner - the Wellcome Trust Brighton and Sussex Centre for Global Health Research (WTBSCGHR). In addition, several external experts were also invited. This is partly due to the GHBN’s expansion beyond the MOPs, but also because these experts provided useful analysis and insight into our discussions about the future and purpose of the GHBN. These experts were:
• Georgia Bladon, MESH/Wellcome Trust
• Bella Starling, Wellcome Trust.
• Paulina Tindana, Navrongo Health Research Centre
• Robin Vincent, Wellcome Trust Community Engagement expert
Finally, two more representatives from the Wellcome Trust – Paul Woodgate and Katherine Littler – also attended the Summer School and shared valuable advice on WT funding and possibilities for members of the GHBN.
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 the WTBSCGHR, four participants were funded by the Wellcome Trust, one participant was funded by the ‘vulnerabilities and abilities of women, children and families in health research’ project, and one funded by the ‘understanding the enduring ethical complexity of obtaining valid consent to research in low-income settings’ project.
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.
Announcements regarding the Summer School were sent to MOP Directors and key contact staff at the MOPs in March 2016. The GHBN proposed to fully fund between 6-8 participants from each MOP, which is the largest number that has ever been funded before. Within the budget provided, individual MOPs made their own decisions about which staff members to send to the Summer School.
60 participants in total attended the summer school, making this the largest summer school ever held. It is likely that future Summer Schools will consist of a smaller group.
Delegates came from the following 16 countries: Cambodia, Ethiopia, Finland, Ghana, Kenya, Laos, Malaysia, Malawi, Myanmar, Nepal, New Zealand, South Africa, Thailand, Uganda, the United Kingdom, and Vietnam.
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.
Based on the interests of participants, the Summer School agenda was organized around five key themes, creating a rich and varied agenda:
5. Building ethics into research and RECs
In addition to these five themes, an on-going topic of discussion throughout the Summer School was ‘the future of the Network’.
Activities at the Summer School
Broadly speaking, the activities at the summer school fell into the following categories:
• Short, five-minute talks on work happening across the MOPs in the context of the five themes listed above
• Five to ten-minute talks on work happening across the MOPs as part of the two new, cross-MOP collaborative projects taking place in the areas of vulnerability and consent
• Longer, introductory talks that set the agenda for a specific theme, or that presented a particular case study
• Group work sessions where participants worked in teams to brainstorm on the future of the Network
• One ethics ‘clinic’ where KEMRI-WT researchers and staff gave short presentations and discussions on specific ethical problems that have come up in their practical work
• A session on online platforms
• A session on the role of social science in global health ethics
• A session on ‘Reflections on new areas and directions for the GHBN’ – a forward-looking session focused on gathering input on what GHBN members think the Network should aim for or achieve over the next 5-10 years, and how we should grow over that period.
• A poster presentation session
• Tours of the KEMRI-WT programme, and a site visit to see their community engagement work
The Summer School started with the exciting announcement that the GHBN has received five more years of funding from the WT! As a result, during this Summer School participants were asked to think about:
• The future of the Network – ideas for activities and areas of research. (Some of the new activities already put forward on the table include: the creation of a competitive PhD scheme across the MOPs; new postdoc positions across the MOPs; expansion of the Network to include other WT-funded groups and individuals; the establishment of a regular, major international global health bioethics conference).
• Some of the emerging themes everyone was asked to consider included: children and young people; vulnerability and agency; consent; building ethics and engagement into science; data and sample sharing and biobanking; emerging drug resistance; research in public health emergencies; and fairness and justice in research collaborations.
Following on from this exciting update, all the MOPs, the Ethox Centre, WTBSCGHR and MESH got a few minutes to update the participants on the latest projects and activities taking place across all the regions.
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: Children – The introductory talk for this theme was given by Bobbie Farsides of the WTBSCGHR, who talked about the ethics of research with children. She posed the question ‘what is a child’? and talked about her work with the Nuffield Council in producing a report about involving children in research. The report examines ethically appropriate levels of involving children in decision-making regarding clinical research. The report provides a series of case studies to help researchers figure out how best to involve children.
• Srey Mom Pol, a Bursary Fellow from Cambodia, presented a video showing her work with the Young Person’s Advisory Group in Cambodia. The video showed that the group was working successfully and had empowered children to be more involved in research.
• Kyaw Myo Tun, a Bursary Fellow from Myanmar discussed his project, which explores the ethical recruitment of young people in clinical research in Myanmar. He spoke of the cultural issues in the region, which leaned heavily towards giving deference to authority figures such as doctors and parents.
• Alun Davies of KEMRI-WT presented on his schools engagement project, and revealed that his project has stimulated an interest in science and research careers, and reduced the fear of research and researchers in the community.
• Helen Mangochi of MLW introduced her new project, which will explore perspectives on assent among guardians and children in Malawi.
• Finally, Vicki Marsh asked the question ‘should children and young people make decisions about research participation’? In Kilifi, different groups were consulted for their views on this question, and most agreed that children should be involved in decision-making in relation to their capacity to make ‘good’ decisions, and the perceived risks of the study.
• Bobbie Farsides closed the session on children by talking more about the Nuffield Report on children in research.
• Theme: Vulnerability and Agency – Maureen Kelley of Ethox and Sassy Molyneux of KEMRI-WT introduced these themes to the audience. Maureen discussed why vulnerability is important and how researchers can respond to it, especially when being included in research can sometimes increase one’s vulnerability. She highlighted the importance of properly understanding vulnerability and agency, and introduced the audience to a new cross-MOP collaboration that has recently been funded by the WT, titled: In their own voices – vulnerabilities and abilities of women, children, and families in health research.
• Sassy talked about vulnerability and agency in health policy and systems research. She discussed the various influences on vulnerability and agency (household level, social level, health systems level) and their impact on child health outcomes, and concluded that understanding and challenging vulnerabilities and supporting and building on agency are ethical concerns that researchers should consider.
• Ariella Binik of Ethox discussed the difficulties inherent in defining vulnerability in research.
• Gabriel Darong of AHRI introduced a study he’s involved in on the subject of bottlenecks in healthcare for people living with HIV/AIDS. The study considered the vulnerabilities of people living with HIV/AIDS and tried to address them responsibly.
• Suphak Nosten of SMRU focused on the specific vulnerabilities faced by the population living on the Thai-Myanmar border, and how they often turn to researchers for help because they have no one else to ask.
• Nguyen Thi Thanh Thuy of OUCRU talked briefly about the population of pregnant women and children in her Tetanus Public Engagement project in Viet Nam, and about the attempts researchers are making to increase uptake of vaccinations within this vulnerable group.
• Elvis Moyo of MLW highlighted several scenarios where individuals can be vulnerable when participating in health research in Malawi. He urged researchers to take these issues into account when carrying out their research.
• Scholastica Zakayo and Rita Wanjuki of KEMRI-WT introduced the audience to one of the case studies they will be covering as part of the ‘In their own voices’ cross-MOP study mentioned above. The case study is called CHAIN (Childhood Acute Illness and Nutrition Network), and they will examine how health researchers and health workers respond to vulnerabilities and agency within this study.
• Wezzie Lora of MLW talked about her new PhD project, which plans to explore female sex workers’ vulnerability in relation to HIV testing and prevention.
• Finally, Bella Starling of the WT, talked about vulnerability in young people and the importance of partnering with young people in order to reduce their vulnerability in research.
• Theme: Consent – Susan Bull of Ethox and Janet Seeley of AHRI introduced this theme, focussing on how consent is an ethical issue in global health. Susi highlighted that despite general consensus on the importance of valid consent in research, the meaning of what constitutes valid consent is still being debated. Furthermore, in practice, the consent given to research frequently doesn’t meet core criteria. She introduced the new, GHBN multi-site study that has recently received an Enhancement Award from the WT, titled: Understanding the enduring ethical complexity of obtaining valid consent to research in low-income settings.
• Janet Seeley highlighted the difficulties inherent in understanding the meaning of: ‘valid informed consent’ by posing the question: valid to whom? She revealed that different groups – researchers, research participants, research ethics committees, etc. might have very different perspectives of the meaning of ‘valid’ consent.
• Alex Hinga, a Bursary Fellow from KEMRI-WT, talked about his role in the new, GHBN multi-site consent study mentioned above. As part of his PhD, he will study consent in Demographic and Health Surveillance Systems, and will compare perspectives on consent across HDSS in Kenya, Ghana, and South Africa.
• Betty Kalama and Salim Mwalukore, Bursary Fellows from KEMRI-WT shared their project on strengthening the processes for informed consent translation. Their aim is to enhance communication and improve informed consent by developing a Kiswahili and Giriama translation guidebook of commonly used difficult terminologies and phrases used in consent forms.
• Khadija Khan, a Bursary Fellow from AHRI, shared her bursary project on the ethical concerns over the analysis and storage of excised human lung tissue. Khadija will be exploring the perspectives of health care workers with the aim of developing tools to standardise consent processes across surgery and research.
• Martha Zewdie, based at the Armauer Hansen Research Institute in Addis Ababa, Ethiopia (and part of the WTBSCGHR Network), talked about challenges to informed consent in her research. She highlighted problems around language, literacy, and undue influence and coercion, and especially the difficulties when recruiting children.
• Mary Chambers of OUCRU briefly talked about the specific problems that arise when consenting for participatory visual methods (e.g. the difficulty in remaining anonymous if your voice or face might be recognized on a video). To resolve some of these problems, Mary introduced the concept of ‘dynamic consent’, where consent is requested on multiple occasions or at different stages of the process.
• Tinofa Mutevedzi of AHRI introduced his new study to us, which posed the question “how can we ‘appropriately inform children in rural KwaZulu-Natal about research which includes HIV and genetic testing of blood samples”? Tinofa will be speaking to children, parents and other stakeholders about this issue in order to understand their perspectives.
• Evelyne Kestelyn of OUCRU shared with us a project she’d carried out in Rwanda on informed consent and participation in clinical research. The study found that choice about research participation is often overshadowed by health services provided, benefits received, and research rumours. As a result, the decision to participate (or not) in research is often made before participants attend informed consent sessions.
• Phaik Yeong Cheah of MORU discussed her new study which will focus on ethical challenges related to consent following implementation of a new data sharing policy at MORU. Phaik Yeong will examine the impact on how information is presented, how it is understood, as well as stakeholder views on broad consent.
• Finally, Daniel Mbuthia of KEMRI-WT closed the theme of consent by giving a brief overview of the work he’ll be doing as part of the GHBN multi-site consent study. He will focus on consent in pragmatic clinical trials in Kenya, and will aim to understand national requirements for consent for use of patient data for audit/research, as well as current practices in Kilifi with regards to use of routine clinical data in research.
• Theme: Engagement – This theme was led and introduced by Dorcas Kamuya of KEMRI-WT, Robin Vincent of the Wellcome Trust, and Mary Chambers of OUCRU. Robin began the session by emphasising the importance of engagement in research. He described different types of engagement, the motivations and rationale behind engagement, and highlighted some critical perspectives on engagement. Later in the day, Robin also gave an overview of methods for evaluating engagement. He highlighted how complicated this area is, with many practical challenges, including the difficulties inherent in trying to measure contribution or attribution.
• Mary showcased OUCRU’s public engagement work in her presentation. She gave examples of their work in Science theatre, magazines, science cafes, and other public events. She also talked about OUCRU’s capacity development strategies to improve communication skills for those on the frontlines of health care delivery and research.
• Dorcas shared highlights from her project, which maps the engagement work taking place across the MOPs. She revealed that there are a variety of interesting and innovative approaches in community and public engagement across the MOPs. The second phase of her project will explore how MOPs carry out engagement work in relation to ethically complex issues, such as biobanking. Dorcas also talked about an upcoming (2017) workshop, which will focus on sharing and discussing approaches to evaluation of community and public engagement activities. The workshop will be supported with funding from WT, MESH, and the GHBN and will involve 25 participants from across the MOPs.
• Dumile from AHRI presented on a participatory approach to engagement. She described how her team carried out a ‘transect spiral walk’ - walking in circles from the ‘centre’ of the community as a way to understand and engage with the community prior to the study.
• Maureen Kelley briefly summarised the range of engagement research currently taking place at the Ethox Centre. This includes work on health research and men who have sex with men in sub-Saharan Africa (in collaboration with KEMRI-WT); arts practice in a medical context; being part of the Genomics England project; research on developing a video to improve patient understanding; and exploring issues around medical practices, such as autonomy, risks, and quality of care.
• Elvis Moyo of MLW talked about engagement in practice at MLW. He talked about MLW’s receipt of a PPE grant, which means they can carry out new engagement activities, such as community film shows, community debates, and community engagement clinics. MLW also plans to ramp up its rural science cafes and radio programme, as well as continue its exhibition project.
• Francis Kombe of KEMRI-WT shared his recent work on engagement with fieldworkers. Kombe and his team are establishing an international fieldworker’s network. He talked about the importance of engaging and training fieldworkers, and their impact on research integrity and ethical practice.
• Deborah Nyirenda of MLW shared an update from her PhD work, which focuses on understanding factors that shape community engagement in health research in Malawi. Her preliminary results show that researchers and community members have diverse and, sometimes, conflicting aims for engagement. She also found that different communication approaches and interactions with other service providers have an impact on engagement.
• Phaik Yeong Cheah of MORU showed a film depicting the success researchers in Thailand are having by engaging with the community through village drama.
• Kate Gooding of MLW shared a case study from Malawi on the monitoring and evaluation of science communication. Kate described the process they followed at MLW, beginning with clarifying the purpose of M&E, clarifying the intended outcomes of science communication activities, carrying out a theory of change workshop, and identifying what information they needed to gather through M&E. Finally, they worked out how to identify appropriate M&E methods.
• Noni Mumba of KEMRI-WT presented a case study on evaluating a radio project in Kenya. The aim of their evaluation was to understand the effectiveness of using radio to enhance health research information among the public. Thus far, the formative evaluation has been done, and the project is undergoing continuous monitoring. The project has been successfully received, and the findings from the evaluation will inform phase 2 of the radio project in 2017.
• Bella Starling of WT presented on a framework for ethical engagement.
• Finally, Lindsey (AHRI) and Salla Sariola (Univ of Turku and Ethox) jointly shared the results from a recent workshop they organized on the ethics and politics of engagement. (More information can be found at this link: https://mesh.tghn.org/training-and-events/ethics-and-politics-2016/)
• Nicola Desmond of MLW gave a special talk on ‘The role of Social Science in Global Health Ethics.’
• Bernadette Kombo, a Bursary Fellow from KEMRI-WT, followed up Nicola’s talk with a presentation on her bursary project, which explores facilitated film viewings as a community engagement tool in research involving MSM in Kenya.
• Theme: Building ethics into research and RECs – Within this theme, participants shared short reflections on how they build ethics into their own research. We heard from a diverse range of projects across the Network. They included:
o Paulina Tindana of the Navrongo Health Research Centre – presented on her experience with H3Africa. She revealed the difficulties she faced as an ethicist, joining a team of scientists who viewed her with suspicion, afraid she was going to present obstacles to their work. Continuous communication eventually showed the scientists that introducing ethics into their work could enhance rather than impede it.
o Katherine Littler of the WT and Susi Bull of Ethox – presented on their data and sample sharing project;
o Maureen Njue of KEMRI-WT – talked about her work on KEMRI’s Communication and Consent Committee;
o Kate Gooding of MLW – presented on her work with ethics issues in vaccine acceptability;
o Mphatso Mwapasa, a Bursary Fellow from MLW – shared updates on his project about biometrics in medical research;
o Mackwellings Phiri of MLW – shared his proposal for a Bursary project. He wishes to explore the issue of sharing unanonymised participant information between research studies. His hope is to come up with a set of recommendations to MLW and Malawi ethics committees on the appropriate policy around sharing of research participants’ contact information and identifiable data.
o Ibrahim Kedir, based at the Ethiopian Public Health Institute (and part of the WTBSCGHR Network) – presented on the preparation of SOPs for RECs;
o Finally, Angeliki Kerasidou of Ethox shared experiences from her role as ethics advisor to MalariaGEN.
• Theme: Thinking about the future (reflections on new areas and directions for GHBN): Paul Woodgate started off this theme for us by highlighting key aspects of WT funding that are relevant to the GHBN, and showing us the diverse range of funding opportunities that exist from small seed awards, to much larger investigative awards. Katherine Littler shared some insight from her role in working with the WT policy team, while Mike Parker listed some of the activities he envisions in the next phase of the GHBN – such as collaborative bursaries, PhD studentships, writing workshops, and many others. Finally, Bobbie Farsides wrapped up with some thoughts on the links between the GHBN and the WTBSCGHR.
One session at the Summer School focused on online resources. Robin and Georgia focused on MESH, Susi talked about the Global Health Network and a new website called: Global Health Bioethics, Research Ethics and Review (a merger between the old Global Health Bioethics and Global Health Reviewers websites), and Dina Rippon talked about e-MOPs, which is the primary GHBN website.
Mesh is a platform for best practice sharing among those working in community engagement in global health. Georgia and Robin walked participants through the different features of Mesh, and also quizzed people about their online habits to discover what we found most helpful.
Susi informed participants about the latest eLearning resources available on the Global Health Network website. Many of these eLearning courses are relevant to Network members, and were designed with the help of ethics experts from Ethox and all the MOPs. Some of the eLearning courses Susi highlighted included:
• Introduction to reviewing genomic research
• Ethics and best practices in sharing individual-level research data
• Introduction to informed consent
• Essential elements of ethics
• Research ethics online training
In addition, Susi alerted participants to the numerous resources available on the new Global Health Bioethics, Research Ethics and Review website.
Finally, Dina highlighted various aspects of the e-MOPs website. This is the website where Bursary Fellow projects are showcased, and where Bursary Fellows share their updates. E-MOPs also provides Network members with a space to create groups for project work and collaboration, look up Summer School resources, keep in touch, and receive announcements on Network activities.
KEMRI ethics clinic
For the second time at a Summer School we held an ‘ethics clinic’, which turned out to be highly popular. Two KEMRI researchers gave short presentations on ethical challenges that have arisen in their work. Challenges included questions such as:
- What do you do when, in carrying out research on members of a vulnerable group (such as MSM), your own research staff are exposed to threats or are put in dangerous situations?
- What happens when you're carrying out a study on infant nutrition, and it's possible that fieldworkers might skew the results of the study by discussing nutrition with mothers?
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.
For the second time, the Summer School hosted a poster competition. There were 8 posters submitted in total (2 from South Africa, 4 from Malawi, 1 from Kenya, and 1 from Cambodia). 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 Alex Hinga of KEMRI-WT. His poster featured his upcoming Bursary project on ethical issues in HDSS in sub-Saharan Africa.
The 8 posters submitted were:
1. Strengthening monitoring and evaluation of Science Communication at the Malawi-Liverpool-Wellcome Trust Clinical Research Programme – Kate Gooding, MLW
2. Ethical Issues for Health and Demographic Surveillance Systems in Sub-Saharan Africa – Alex Hinga, KEMRI-WT
3. Experiences of people living with HIV/AIDS in a plural health care system: probing tensions and complexities – Gabriel Darong, AHRI
4. CARE: Exploring and understanding the community’s attitudes towards research ethics in Siem Reap, Cambodia – Srey Mom Pol, COMRU
5. Trust and distrust within communities in Blantyre, Malawi – Mackwellings Phiri, MLW
6. Bioethics of biometrics among policy makers, implementers and clients within the health care system and medical research in Malawi – Mphatso Mwapasa, MLW
7. The altruistic nature of our tuberculomas in Durban, South Africa – Khadija Khan, AHRI
8. Understanding coercion in the context of semi-supervised HIV self-testing in urban Blantyre – Wezzie Lora, MLW.
Voluntary tours of the KEMRI-WT Head Quarters were provided by KEMRI staff. These were fascinating and showed the size and scope of KEMRI’s work - the laboratories, and the hospital.
In addition, there was a group site visit to Junju Dispensary, a County Government health facility that is within the Kilifi Health and Demographic Surveillance area. We met with staff from the Hospital-in-Charge, and also spoke with KEMRI Community representatives (KCRs).
At the end of the day on Friday, participants were asked to fill out an online evaluation that was sent to them after the Summer School.
Summary of some highlights from the evaluation
• The themes at the Summer School that participants found most relevant were vulnerability, consent, and engagement (more or less in that order). A number of participants also pointed out that the theme on ‘the future of the Network’ was very useful.
• In response to the question about why these particular themes were chosen to be most relevant, respondents gave reasons such as: (i) they are related to my current job/my day to day work; (ii) they have given me ideas for my immediate work; (iii) I enjoyed the rich discussions after these sessions; (iv) these themes create challenges for me; and (v) they allowed for a deeper understanding of what I do and forced me to reflect on my own practices.
• In response to the question ‘was the poster competition a useful addition to the Summer School?’, 21 replied ‘yes’ (65% of respondents), several did not answer this question, and one person said ‘no’. Out of the people who said ‘yes’, comments included: (i) the poster competition was good because it provides an opportunity for bursary fellows to engage with other people on their research projects; (ii) it was useful because it granted presenters an opportunity to share their research plans and get feedback on how to improve them; (iii) the competition invites people to pay attention and engage with the posters; (iv) I would encourage more participants to submit posters as it is a useful way of gaining experience in a safe environment and (v) I think it was useful for the PhD students. It would be good to try to encourage the non-academic practitioners (somehow) to submit a poster and perhaps have it judged in an alternative category.
There were also some comments about how we can improve on the poster competition in future. These suggestions included:
o Don’t do the public feedback in future, just give private comments.
o For a more systematic evaluation of posters, it might be a good idea to have some criteria (content, organization/presentation, etc,) and allocated points.
o Perhaps we could give poster presenters more time to discuss challenges and new lessons they learned.
o All Bursary Fellows should be encouraged to submit a poster.
o Perhaps there should be some time when (e.g. during a lunch break) poster authors stand by their posters for Q & A time. In fact, it might be good if the poster presentations can replace some of the short, and more factual presentations.
o The criteria for voting should be clarified to participants, as it may be hard for people to judge what is a good poster, or what is a good poster in relation to the theme of the Summer School.
• The next question asked participants whether they thought the ‘future of the Network’ group work sessions were useful. All respondents answered that yes, they were, although a significant minority stated that too much time had been allocated to this issue.
The following question asked respondents if they have any additional thoughts they’d like to share about their vision for the future of the GHBN. Answers varied and included:
o More Training/capacity building:
• Perhaps a training course for new staff who have joined the MOPs. The training could focus on ethics of clinical research or community engagement and the content of the training could include different scenarios from all the MOPs;
• Make a possible clear career path for new researchers and support them to achieve their goals;
• More ethical reasoning courses, and perhaps a diploma;
• More follow-up discussions on specific themes. GHBN website should have basic information on ethics.
• Regional capacity building, as well as continuing smaller summer schools;
• Investing in on-site ethicists and social scientists;
• GHBN should (if possible) provide master’s scholarships;
o More individual support/mentorship:
• Advice for those supporting GHBN Bursary Fellows would help me – best strategies to build capacity of very new researchers without micromanaging, and with limited time;
• Expand mentorship to PhD students and early post-docs. The bursary projects are great and should continue, but also encourage writing manuscripts from these projects;
• More engagement activities for local ethics committees;
• Start a Network journal, or even a newsletter to start the ball rolling;
• A librarian or more core support to develop resources (such as literature reviews) and disseminate the work of the Network;
• Strengthen collaborations and joint publications on experiences across the MOPs; strengthen engagement with policy makers or RECs in our own countries;
Ideas on what the GHBN should focus on:
• The Network should focus more on the roots of challenges, and find out better solutions. These solutions should then be put out as SOPs and shared widely;
• We need more clarity on where engagement sits within the Network and its priorities;
• More discussion sessions at future summer schools and fewer presentations. This will, hopefully, allow more participants to leave the Summer School with more certainty on how to tackle some of the ethical issues they face in their research;
To the question “were there any sessions that were least useful and should have been excluded”, the majority of people said ‘no’. However, several people stated that some of our time could have been better spent. A significant minority said that too much time was spent on CE, and that the group work time in those sessions could have been more efficient.
The next question asked participants whether they found the ‘critical friend’ concept useful. Almost all respondents said this was a useful concept. A minority said that they didn’t have time to meet with their critical friend and suggested that specific time be set aside for this at the Summer School. Someone else suggested that the critical friends should be introduced to each other via email prior to the summer school so that it’s easier for them to comment on each other’s work.
The next question asked participants if the rapporteur ‘wrap-ups’ at the end of Days 1 and 2 had been helpful, and whether this should continue. Most answered ‘yes’, they were helpful.
To the question ‘was there anything missing from the Summer School’, a minority of people said ‘no’. The majority, however, did list one or two things that they felt was missing. This included:
o Specific time to meet your critical friend
o A discussion between more senior and more junior researchers about project development and their own career development
o An explanation of the roles and objectives for participants
o Help with writing manuscripts
o Would have liked to hear more about evaluation of certain projects
o More case studies of some of the more challenging issues raised and discussed
o More time to discuss challenges and solutions or lessons
o More time on ethics reasoning
o More focus on theoretical aspects of ethics
o More chance to discuss research priorities at the different sites.
To the question ‘how do you feel about the balance of activities at the Summer School’, the majority of respondents said that there were too many presentations. Several respondents said it would have been good to have more time for idea sharing and in depth discussions. However, several people also said the social activities were good.
To the question ‘What for you is the most important output of the Summer School,’ respondents highlighted the ideas that are generated at Summer Schools, information exchange, education, and the opportunity to network. Many people stated that they had learned a lot from hearing about the research going on across the MOPs. Several said that getting comments from senior researchers on their projects had been very valuable. Basically – the Summer School was praised as a place where people learned a great deal, got new ideas, felt encouraged after speaking with senior researchers, and formed new friendships and bonds.
To the question ‘Has the summer school made an impact on the way you think about ethics, or on how you think about your work’, most respondents said ‘yes’. Several said the Summer School had helped them redefine many concepts, and realise the importance of expanding their own viewpoints. One person said the Summer School will definitely lead them to review their guidelines on involving children in research, and another said it allowed them the space to think creatively about aspects of their work that they hadn’t considered. Many said it has encouraged them to think about ethics in a contextual manner, and that ethics is more than just ‘ticking a box’. Some other interesting comments include:
o The Summer School helped awaken me on the need to ‘properly’ and ‘adequately’ involve the community…in all stages of my research project as not doing so can lead to a poor understanding and acceptance of the project in the community;
o It made me think differently about meanings of vulnerability and how to address vulnerability;
o I know understand more about communities I work with…for instance previously the way I used to understand ethics in research is different than the way I do now…I thought that other things were normal but I have come to realise that they are ethically wrong and we need to find a way of making them right;
o It has helped me think more critically about ethics. E.g. it was so refreshing to hear how assent process is argued out in relation to age, etc.
To the question ‘do you think you will do anything differently in your work’, most respondents answered ‘yes’. One person said they will ‘plan for the future differently’. Another said he/she will ‘discuss and debate more before giving advice to colleagues on ethical issues’. Someone said they will have participants’ needs and rights in mind now, more than before. Everyone’s answers were different, but most revealed that they would do things differently, either in how they related to people, or in how they thought about things. Additional comments included:
o I will change the way I obtain consent from people before taking their pictures;
o I am more enlightened about ethics and the importance of community engagement;
o I came across theories on intersectionality that will help me in my data analysis;
o I will be a good listener, practice to share more, do more for others.
Finally, there was a lot of praise for the summer school in general:
o Advance info all good. Hotel very nice.
o Everything was well organized and I received important information prior to travelling which was very helpful.
o Very well organized and programme was great. Lovely venue, which is important when we are working hard.
o The team that organized the Summer School was simply amazing.
o The organization was great, and the logistics side of the Summer School absolutely fantastic.
o Thank you. It was a wonderful event to run and it was very interesting, inspiring, and useful;
o Absolutely nothing but great appreciation for being allowed to be part of this very important Network. The coordination and logistics prior, during, and after the Summer School were excellent.
o The host site KEMRI-WT was very welcoming and accommodating.
o It was excellent.
Of course there were also suggestions for improvement. Some final constructive points that people raised were:
o Need better internet – as people are combining Summer School with their day jobs;
o Need less time for presentations, and more time for meetings;
o Minor thing – would be great to have some healthy options at break times, e.g. fruit, meant to be supporting global health, etc.
o I think vegetarians might have struggled a bit due to lack of variety;
o There’s a need to have options for lodging for the host MOP as some stay far away from the workshop venue and so have to cover great distances to attend the Summer School.
Lessons learned from the evaluation
Having had five Summer Schools and learning from the experience, we can confidently say that the 2016 Summer School was a big success. We implemented many of the changes and improvements participants had suggested in earlier years, and continue to expand the group of participants beyond the MOPs.
Lessons for the next Summer School include:
a) Try, if possible, to allow for fewer presentations and more discussion time. This is difficult as we want to give everyone a chance to speak, but the majority of participants this year found the number of presentations to be overwhelming.
b) Perhaps introduce some satellite sessions, or provide space for ‘working groups’ if there are certain people who want to delve deeper into a particular area, which might not be relevant to everyone at the Summer School.
c) Introduce a ‘Bursary Fellow training day’ (or half-day) prior to the Summer School, perhaps? This goes hand-in-hand with the suggestion that we come up with a Bursary Fellow induction package. This day can be led by former Bursary Fellows.
d) Continue the concept of Critical Friend, but set aside specific time during the Summer School to ensure that everyone meets their CF.
e) Perhaps, instead of short, factual, presentations, encourage participants to submit more posters? This way, we can have a separate poster session with author Q & A time as an alternative to presentations. Consider coming up with a more rigorous evaluation criteria for helping participants vote on the best poster, and consider giving only private feedback to poster authors instead of public feedback.
f) Think more strategically about exactly what kind of group discussion sessions to have, and figure out in advance precisely what we want to come out of the group discussion sessions in order to make them as efficient as possible.
g) Consider whether to introduce more ‘practical’ sessions, such as help with manuscript writing, or specific training. There also seems to be an interest in more moral reasoning courses – but whether this is something to do at a Summer School is not obvious.
At the end of the summer school, Certificates of Attendance were presented to each participant.
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