Ethics & Engagement across the Wellcome Trust Major Overseas Programmes
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The sixth annual Global Health Bioethics Network (GHBN) Spring School was hosted by the Africa Health Research Institute. It took place at the Blue Waters Hotel in Durban, South Africa from 25-29 September, 2017.
Attendance was open to ethics and engagement staff from the Wellcome Trust Africa and Asia 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, three external experts were also invited to provide useful analysis and insight into our discussions about the future and purpose of the GHBN. These experts were:
• Robin Vincent, Independent Consultant
• Jantina De Vries, Associate Professor in Bioethics, University of Cape Town
• Gill Black, Sustainable Livelihoods Foundation, Cape Town
Finally, one representative from the Wellcome Trust –Katherine Littler – also attended the Spring School.
Although most places at the summer school were fully funded by the GHBN (Wellcome Trust Strategic Award), three participants were funded by KEMRI-WT, one participant was funded by the WTBSCGHR, one participant was funded by the Wellcome Trust, and two participants were funded by the REACH 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 Africa and Asia Programmes 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.
46 participants in total attended the spring school.
Delegates came from the following 10 countries: Ethiopia, Kenya, Malaysia, Malawi, Myanmar, New Zealand, South Africa, Thailand, the United Kingdom, and Vietnam.
Based on the interests of participants, and the areas proposed by the MOPs the Spring School agenda was organized around six key themes:
1. Ethics in Challenge Studies
2. Ethics in genomics and infectious diseases
3. Ethics & data sharing
4. Supporting field workers
5. Ethics of research with children and young people
6. Ethics of research with vulnerable groups
In addition to these five themes, other important topics of discussion at the spring school included evaluation of the GHBN, diagnosing ethical problems, a grant writing session and poster presentations featuring individual projects.
The Summer School started with an introduction to AHRI and their work, followed by an overview of the GHBN and highlights of achievements of Network members. For example, some of the highlights included:
• Dorcas Kamuya of KEMRI-WT received a WT Fellowship Award earlier this year;
• Maureen Njue, a former Bursary Fellow and also of KEMRI-WT, was awarded an Erasmus Mundus fellowship to do a PhD at the Institute of Tropical Medicine in Antwerp, Belgium this year;
• Paulina Tindana, a former DPhil student at Ethox and member of the GHBN received an H3Africa AESA grant to establish a Pan-African Malaria Genetic Epidemiology Network;
• Jantina De Vries, a former DPhil student at Ethox and Senior Researcher at the Univ of Cape Town received a five-year H3Africa NIH award to establish an H3Africa ELSI Collaborative Centre. (Since the Spring School, Jantina has been promoted to Associate Professor).
In addition to highlighting achievements of Network members, the opening presentation also mentioned the large, cross-programme collaborations taking place, such as the REACH project and our work on the enduring complexity of consent. There is also interest to do collaborative work on challenge studies.
A summary of what was presented on the six themes
• Theme: Ethics in Challenge Studies – Kate Gooding, Dorcas Kamuya, Evelyne Kestelyn and Mike Parker led this session on challenge studies. An introduction of challenge studies was presented. Although challenge studies can be carried out in an ethical way, there are several things to consider. For example: is it ethical to infect an otherwise healthy person – particularly in cases where there is a (very small) risk of an untreatable condition? Could this research have been done in animals or in vitro? Can valid consent be achieved? How should compensation levels be judged? Is the risk of long term harm acceptable? Dorcas presented on experiences of a malaria challenge study in Kenya. Motivations for participation in the study included the health care benefits and compensation. Overall, participants were happy to participate, although one of the questions that arose in the study was what are the appropriate levels of compensation for these types of studies? What are the risks of being involved in these studies? Are they really low risk? And do current frameworks provide adequate guidance?
• Theme: Ethics in genomics & infectious diseases – Janet Seeley and Jantina de Vries led this session. They began by stating that genomic research anywhere raises a number of ethical issues, but genomic research in resource-constrained settings, with people who may have had limited opportunities for education for education, and may have limited health care options raises even more ethical challenges. Genomics research is expensive, fast-changing, data-intensive, complex to explain, and needs huge sample numbers. The main ethical issues in genomic studies are privacy and confidentiality. Because genomic information is unique to individuals, absolute guarantees of confidentiality cannot be made. Genomic research results can also be used for all sorts of other research, including research on other diseases. This makes it difficult to figure out how to obtain the appropriate consent for such research. The different types of consent include specific consent, multi-layered consent, broad consent and blanket consent.
• Theme: Ethics & data sharing – Susan Bull and Katherine Littler led this session. The presentation focused on sharing individual level data from health research. There are several reasons to share individual level health research data. These reasons include improving science, improving health, and moral reasons for data sharing. However, there are also concerns about data sharing, including ethical concerns about the protection of privacy and confidentiality and appropriate models of consent. One of the key questions asked in the presentation is – what is equitable sharing? The GHBN recently completed a cross-programme collaborative project on equity in data sharing. Core themes that arose from the qualitative studies carried out by the GHBN were: the potential benefits of sharing, minimising harms, fairness and reciprocity, and trust and trustworthiness.
• Theme: Supporting field workers – This session was led by Patricia Kingori and Elvis Moyo. They asked us to think about the ethical problems that fieldworkers face on a daily basis when carrying out their duties. Several case studies were presented as a way of showing the problems that fieldworkers face. Elvis gave the example of a study that asked Malawian fieldworkers what they think is an ethical gift. Fieldworkers felt that gifts should be equivalent across all projects so they would not have to explain to research participants why one project gave better gifts than another. Another case study looked at the emotional work of being a fieldworker in South Africa. It revealed that fieldworkers had a difficult time keeping their emotional distance while interacting with study participants. Participants often shared very intimate details of their lives with the fieldworkers, which greatly affected the fieldworkers. Although the fieldworkers were trained, they felt unprepared for many of the issues they faced. This raises questions about institutional responsibilities to the emotional well-being of fieldworkers, and about how much support they need.
• Theme: Ethics of research with children and young people – This session was led by Mary Chambers, Alun Davies and Jen Roest. The session addressed the key ethical issues that arise in research with children. These include the context of the research, competency to consent, and issues around parental consent and assent. Other issues include vulnerability and overprotection, and privacy and confidentiality, among others. Members of our Network were involved in a report on Children and Research by the Nuffield Council on Bioethics. The report talks about the importance of finding ethically and scientifically robust ways in which to conduct relevant clinical research with children. The session included discussion about the importance of involving children in research, as much as they wish and are able, and laid out the guidelines provided by the Nuffield report. The presentations concluded by stating that good research is important for children and young people, and that it is important to engage with this group. Engaging with school students in Kenya has had a big impact in promoting an interest in science and raising awareness of locally conducted research.
• Theme: Ethics of research with vulnerable groups – This session was led by Nok Jatupornpimol and Vicki Marsh. Vulnerability is a broad term, and the session began by asking everyone to think about what it really means in terms of research. It is important to think about the vulnerability paradox – inclusion vs overprotection leading to exclusion. Research ethics guidelines still take a population based approach to vulnerability. We as researchers need to ask how we will respond to participants’ vulnerability and needs? What kind of link to care can we provide? How can we respect participants’ autonomy and agency? The case studies for this session asked participants to focus on three questions: what specific forms of vulnerability can you identify for research participants? What forms of resilience or agency do participants have that would help them to respond to these forms of vulnerability? In planning and conducting this study, what should researchers do to take account of the types of vulnerability that have been identified?
A Summary of the ‘how to’ sessions focused on practical issues faced by
• How to diagnose ethical problems: This session was led by Maureen Kelley and Scholar Zakayo. It pointed out the importance of being clear about the meaning and scope of ‘ethics’ in our work. To take an ethical perspective is to ask – should this be this way, or why should this be? Ethics is concerned with what is good/bad and what is right/wrong. The session also talked about different approaches to ethics work - ethics can sometimes be very aspirational and theoretic, while at other times it can be very practical and grounded. Ethical questions are often hidden or implicit in complex social, cultural, economic, political, or medical problems.
• Grant writing in social science, ethics and community engagement: This session was led by Dorcas Kamuya, Maureen Kelley, Patricia Kingori and Mike Parker. The session covered practical advice regarding how to get started with an idea, writing a grant, surviving the review process, the interview, and what to do after the decision. The speakers shared their experiences – both positive and negative – with writing grants, receiving grants, rejections, and sitting on review panels.
A summary of what was learned at the ‘evaluation’ sessions
Robin Vincent, an independent consultant led two sessions on evaluation. The aim of these sessions was to get us to think about what an evaluation of the GHBN might look like. The presentation went over the GHBN’s strategic aims and priorities. The purpose of an evaluation would be to assess the contributions of the network, and its impact. There are three main areas that Robin asked us to think about: individual capacity; the characteristics of the network; and the impact of the network with respect to its influence and its relationship with other networks. Participants were given a chance to discuss these issues in groups, then share their thoughts. In his second presentation, Robin asked us to think about various evaluation options, and the purpose and focus of the evaluation. We discussed scope and ownership of the evaluation and various approaches to evaluation. In the next steps, we will continue consultations about focus and scope of the evaluation, explore practicalities of different approaches, balance work at individual, programme and network level, review and share recommendations with the network, and decide a process to agree options and develop evaluation tools.
AHRI ethics clinic
For the third time at a Summer School we held an ‘ethics clinic’, which was attended by AHRI scientists as well as spring school participants. AHRI scientists and researchers gave short presentations on ethical dilemmas that have arisen in their work. These were followed by discussion. Challenges included questions such as:
- Do you tell a mother that her daughter and grandchild are HIV positive (assuming the daughter has not given her consent) in a situation where the mother is temporarily caring for the grandchild and has to administer drugs to the grandchild?
- Do you tell a parent that their 13 year old child has HIV (or another STD) when they are not even aware that their child is sexually active, and when their child specifically requests that you maintain confidentiality?
- What do you do when a research participant requests an additional health service from you (the researcher) for their child, saying that they cannot accept this help from anyone else?
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 third time, the Summer School hosted a poster competition. There were 12 posters submitted in total (2 each from South Africa, Malawi and Ethiopia; 3 from Kenya; 1 from MORU; and 2 from OUCRU). The posters were displayed in the meeting room for the entire duration of the Spring School. Individual feedback was privately provided to each poster author on their poster, and the Spring School participants were also asked to vote for their favourite poster. The joint winners of the poster competition were Helen Mangochi of MLW and Alex Hinga of KEMRI-WT (who also won last year).
There was a group site visit to KwaMsane clinic, one of the primary health care clinics where AHRI research is carried out. We also met with Sphephelo Dlamini (AHRI Nursing Manager) who talked to us about the services provided at the clinic and how the clinical aspects of AHRI’s research are managed. We drove to homesteads in the KwaMsane area where Field worker co-ordinators met us and explained the process of household entry and the activities of the fieldworkers. After this, we drove to the Africa Centre building in Somkhele where we had a short tour of the call centre (we saw a demonstration and explanation of the telephonic data collection), as well as a ‘Data Everywhere’ demonstration by Siyabonga Nxumalo, a Data Manager. This was followed by the ethics clinic. Overall, it was a fascinating day and gave us a good glimpse into the challenges faced by AHRI field workers and researchers and the setting in which they work.
At the end of the day on Friday, participants were asked to fill out an evaluation form.
37 participants filled out the questionnaire (80% of participants).
This is just a summary of a few key questions answered by respondents in the evaluations.
The summer school emphasised group work in each session in order to encourage participation and stimulate the sharing of information and ideas. Was this focus on group work a useful part of the summer school? What are your thoughts on the structure of the sessions?
• Positive comments:
o 24 people (65%) said the group work was really good. They said it was both interesting and useful for developing critical thinking and analysis skills. It was also great because it involved everyone and reduced SS preparation. Several respondents pointed out that the range of case studies resulted in very rich discussion. It encouraged a lot of insightful conversations. One person said it was a good way to combine theory with practice, and another said that they loved hearing the different perspectives, and when participants disagreed, there was always a solution.
• Room for improvement:
o Although there was a lot of praise for the group work approach, there were also many comments on how it can be improved. These changes included: next time we should include more theoretical and cutting-edge plenary presentations; there were too many case studies; a variation in the flow of formats would have been good. For example, it would be good in future to mix it up with other participatory methods e.g. role play, working in pairs, smaller groups, different groups (force people to move tables), etc.
What, for you, is the most important output of the Summer School?
• The answers for this section of the evaluation fell into several categories. Please note that some people mentioned more than one output on their evaluation forms:
• Networking/forging connections & collaborations: The largest number of respondents to this question (19 people) stated that the most important output of the SS was meeting people and forging new connections and collaborations. Comments in this category included things like: “It is very useful to meet up with colleagues with whom we’re conducting research and writing up papers”; “the SS helps me to strengthen existing relationships and meet new people in the field”; “I made very good connections which I hope will lead to future collaborations”. The supportive atmosphere which ‘encourages’ Network members in their work was highlighted by several people as an important part of the SS. One person said: “My main benefit is that I have met people who have challenged me to write about my project and finish it”.
• Gaining new knowledge: 18 respondents pointed out that gaining knowledge on ethical issues & research practice in other MOPs was the most important output for them. This group of respondents talked about the importance of getting to know the challenges across the network, learning from others experiences, getting advice on how to do their own projects, and consolidating findings/experiences across sites. One person said: “I learned a lot about ethics in research & possible issues that might come up in conducting a study. It will be very useful for my project.” Other places where people pointed out that they had gained new knowledge included: clarity on how to diagnose an ethical research/question; better understanding of the notion of vulnerability and community engagement; how to organize a presentation and make it interesting.
• The SS was not just about gaining knowledge, however. Some highlighted the opportunity to reflect on a range of practical & ethical issues as a huge benefit. A couple of people said that the SS helps them to analyse ethical issues in global research, and to understand ethical issues from different perspectives of stakeholders.
• Being inspired: Four respondents said that the SS inspires them – it pushes them to think about new ideas, and to think beyond their own boundaries (methodological or thematic). One person said: “Speaking and listening to other researchers at similar stages in their career, inspires me and helps to develop my own ideas and profile”. Another said: “I learned that there are big people working in bioethics in the real world – it is not just an abstract concept. As a result, it motivated me and inspired me in this field.”
• For those who had been to previous summer schools: Several of the people who had been to a SS before said that their view on the output hadn’t changed. One person, however, said: “Last year’s output was knowledge, and this year was more insight”.
• Another person said that “last year’s summer school was too tight and focused a lot on presentations. This time things were more relaxed and discussions were deeper.”
• Other quotes from SS veterans include: “I continue to gain more understanding and approaches to engagement”; and “Yes, I still feel that I learn so much with every summer school I attend.”
Has the summer school made an impact on the way you think about ethics, or changed your perceptions about ethics? Has it made you think differently about your work? If yes, how?
• Almost everyone answered ‘yes’ to this question.
• Responses fell into several categories:
• Made me more ‘aware’ of ethics: A number of respondents talked about how the SS has made them realise that ethics is a broad subject and ethical issues are all around us. Many said they have gained more interest in ethics, and have gained insight on approaches & methodologies and how one can approach ethical issues. Respondents said they are reflecting more on foundations of ethics principles and have learned about the importance of applying various principles before deciding how to handle a dilemma. One person said that the SS has “given me a chance to reflect on the ethical challenges in my daily work. I even thought of a paper/reflection piece based on the week in Durban”. Another said that it has made them think about the evaluation of ethics research, and another said it has made him/her realise that ethics is less result-driven and more process oriented. One said: “The SS has taught me to be more mindful as a researcher, field worker or data collector when involved in research”.
• Improved my understanding of what ethics is: Several respondents praised the SS for giving them a better idea of all the different types of ethics work (e.g. empirical, conceptual, etc). The SS shows how broad ethics is and can be viewed from different perspectives. One said: “it has made me think about different conflicting interests of various stakeholders when analysing ethical issues”. Another said: “I am understanding more and more the breadth of what is ethics research and the methodological richness of this field”. A couple of people said that knowing so many highly qualified people and their work in the field is inspirational. “I understand even more now that ethics is not only about information and consent.” Others said that the SS has “made me think about giving more attention to fieldworker input”, or has changed their view of vulnerable populations. A number of respondents pointed out that they are now better at diagnosing an ethical question, and have a better grasp about the ethics of data sharing. One person said: “I will definitely concentrate on risks to staff and participants when reviewing proposals. The same when monitoring studies and training staff in research governance and ethics.”
• Made me realise our influence: One person said that being in this network has kick started ethics work at their MOP and helped to strengthen CE approaches. Another said that they can see how committed the network is to real world ethical challenges and realise that the GHBN can potentially change things in a big way. A third said we should be trying to change institutional and national policy on certain issues.
• Two people said they are not sure if they will think differently – they still need time to reflect on the SS.
• One person said that they will not think differently, but more deeply. The SS “acts as a reminder of the importance of context.”
• With respect to SS veterans, they also had a lot to say about the impact of the SS:
o Several of the veterans said that this year they definitely gained a better understanding of data sharing and international collaborations.
o Several said that the topics were much more extensive and interesting than before – and there is an increasingly evident role of ethics in all research. One said: “every time we address a regular topic in a new way, it makes me think differently about my work.”
o A couple of veteran respondents said they liked the new theme of CHIM this year, and the debate.
o Several also praised the new format of group work, saying that the active involvement made them think harder about ethics, and the discussions allowed them to see things from a new light. It was good to have fewer research presentations and explore other ethical issues. One said the discussion on practical field work was especially interesting: “It can help me in my work to improve how to approach the community in terms of ethical engagement.”
o Another veteran respondent said that this SS will help “the reviewing of proposals at my office with consideration to ethics, risks, vulnerability.”
Do you think you will do anything differently in your work, based on what you’ve experienced at the summer school?
• Almost everyone said that yes, they will try to do things differently. These responses were incredibly varied, and ranged from rather broad answers, e.g.: “I will explore more ethical aspects in my research”, to highly specific actions such as: “next year I will design my poster better and improve my presentation/communication skills.”
• Given the wide range of responses, it was difficult to categorize them, but I have tried to group them into several headings nonetheless:
• Specific actions that SS participants will do differently:
o “I have gained some inspiring ideas into methods which I want to try and integrate into the current formative phase of my PhD research project”
o “I will adapt a research question for an upcoming project”
o “I have about 5 interviews remaining for my project. I will now have to revisit my topic studies.”
• Actions focusing on reflection and changing one’s mindset:
o Many respondents said the SS will make them more reflective. One said: “just thinking through and talking about my work made me realize that there are things I could do differently.” Another said: “the SS gives me a broader view on ethics & what are the elements that should be considered in research.” Several said they would take more time to think about ethics in their research and to discuss and reflect instead of giving quick answers or solutions. Respondents also said they would aim to promote more ethics-related studies, and would be able to analyse ethical issues critically and better present empirical results around ethical issues. Three people said they will see & think about vulnerability in a different way as a result of this SS. One person said they will apply their experience from this summer school to challenge studies in the future. One person said they have some new ideas for how to design research projects.
• Actions focusing on collaboration:
o Three respondents said the SS has encouraged them to collaborate more. One said: “I will encourage collaboration between research governance teams.” Another said: “I will collaborate more with colleagues from South Africa.”
• Actions focusing on community engagement:
o Three people mentioned that the SS will affect how they engage with the community. One said: “I have learned that engaging with people only a few times is not enough. Therefore, what I could do is to do more frequent engagement with the community and with field workers.”
• Actions focusing on sharing SS knowledge with others:
o Three respondents said they will focus on mapping our effect and influence more. One said: “I will encourage networking at an institutional level so that ethics becomes mainstream, not an afterthought in research.” Another said: “what I have learned this year will go a long way into supporting other researchers think through engagement and consenting.” One respondent mentioned that they would “increase rigour in some aspects of social science research management.”
• Finally, some respondents said that although they might not do anything differently, the SS is still an incredibly rich experience for them, and they are always progressing in their thinking on certain issues, and often find they are stimulated by new ideas.
If there were two things that the network could do over the next year that would really help you with your career plans, what would they be?
• Responses to this question fell into several categories:
• Support with publishing: Eight respondents highlighted publishing academic papers as a key area where they would like support from the Network. Within the range of specific support needed, they listed: feedback and guidance on proposals and drafts; host a publishing/writing workshop; and concretely establish collaborations for publishing. One said: “as a young researcher this [kind of support] would be very valuable for me as I feel the need to publish and doing this alone is hard.” Several asked for publication and writing skills sessions, as well as some useful tips or workshops for beginners on how to publish. Being invited to be part of group publications was also mentioned. One person went so far as to suggest that we should “write a summary of the summer school discussions, include all as co-authors and present recommendations to ethicists worldwide”.
• Support with grant development for collaborative studies: Six respondents asked for support with grant development, all saying that they wished to collaborate with other Network members. Some said they would like the Network to provide specific opportunities for researchers to collaborate. One said: “I would like help to submit applications together so as co-applicant I can raise the profile of ethics in my unit.” In addition to this support, another three respondents specifically asked for help with obtaining more GHBN Bursary funding and support with Bursary applications.
• Support with Master’s and PhD applications and funding: Five respondents highlighted getting support to do a Master’s or PhD degree as key for their career.
• Start a formal mentorship programme: Four respondents said some sort of formal mentoring would be great. This could include mentoring ‘chats’ on career dilemmas; specific mentors for junior researchers, as well as a more formal mentorship programme for anyone who needs a mentor. One person suggested building ‘similar interests’ groups amongst early career researchers across the network. Requests for mentoring often went hand-in-hand with requests for more general support of capacity building across the MOPs to help young researchers within and across networks.
• Support more cross-MOP visits: Three respondents said that it would be good for junior researchers to visit nearby sites and learn about the work going on at other MOPs. The Network could facilitate a research ‘exchange’ study visit to other MOPs to learn from the research going on there. One said: “it makes such a difference to see things with your own eyes and speak to people in person rather than being isolated behind your own computer.” Others also argued for more frequent, smaller meetings in between the SS. Some said that it would be good to network directly with other MOPs beyond the SS. In addition, the Network could fund site visits in preparation for large grant applications.
• Support additional training: Two respondents said it would be good for the Network to expand training on ethics and community engagement for those at grass roots level who are not able to attend the summer school. A third respondent said that the Network should spend more time on support for field workers.
What do you think is going to be the most important ethical issue arising at your MOP/institution/workplace in the coming years? How do you think the network could help you and your scientific colleagues with addressing this issue?
• Many issues were raised in answer to this question. Below I have listed the most common issues raised by respondents. I have tried to classify them into several broad categories. It’s important to note that most people actually put down more than one issue.
• Ethical issues in challenge studies – Seven respondents mentioned this as a key issue in the future. They said the Network’s role would be to help us think through the issues and share expertise, papers, and other thoughts on these issues. It will be important to think about participant understanding of challenge studies. A cross-MOP qualitative research project on this topic would be interesting.
• Consent – Four respondents highlighted consent as a continuing key issue. They said we need advice on how to improve consent beyond the form. Obtaining consent in illiterate populations is still a big problem, and one person said we need “better guidelines on informed consent – this would benefit my institution a lot.”
• Other issues raised by at least three respondents included:
o Ethics of research on vulnerable groups/young children
o Data sharing
o Training for IRB members and workplace to make them understand why ethics research is important and how it can help them to do better science. (A couple of people raised the issue of the role of IRBs beyond giving approvals). Linked to IRBs was the issue of how challenging it is to get ethical approval and whether the Network can explore the possibility to make this process less challenging?
o Global & national research priorities – several respondents raised the issue of social justice issues & prioritisation of resources in the health care setting; disparities in investment in primary health care and health technologies. One respondent mentioned the emergence of non communicable diseases and the slow shift of research agendas to address this emergence. How will the GHBN address these broader issues, or fight for/against them?
o Embedding ethics/making ethics more visible – How can we embed ethics & engagement into the research process? The Network can help by pushing this agenda with Directors & WT.
• Other issues raised by one respondent each include:
o Field workers
o Should we invest time & money in vaccines with limited effect on basic health services? In general, whether to chase $$ or focus on priority health issues?
o How can we translate some of our ethics work to practice/science and improvements in health?
o How can ethics guidelines can be more context specific in order to be more responsive to the day to day ethical challenges that researchers/front line research staff face? One of the ways the network can help is by making a recommendation about studies to have ethics support post approval.
Lessons learned from the evaluation
Having had six Summer Schools and learning from the experience, we can confidently say that the 2017 Summer School was a big success. We instilled many of the changes and improvements participants had suggested in earlier years, and continue to expand the group of participants beyond the MOPs.
This year, the lessons learned from the evaluation are as follows:
1. Make sure the debate topic is clear.
2. Try to find the perfect balance between presentations and group work – try to include:
a. At least one (or maybe two) plenary sessions on new, cutting-edge, or theoretical issues. Consider inviting an external expert to take part.
b. Allow MOPs to present on the latest research from their regions – but maybe do this in the form of a poster, instead of a regular PowerPoint presentation (as in previous Summer Schools the ‘MOP update’ presentations were too long and participants complained about them). Maybe ask MOPs to specifically talk about ethical challenges they face in their daily research?
c. Ensure that group work activities contain a mix of participatory methods – consider asking SS participants to submit case studies or suggest group work activities for certain themes.
3. For the poster presentations, have them earlier in the week. Also, consider splitting them up to have a few each day instead of one very long session. Consider increasing the prize given to the poster winner.
4. Consider organizing an interesting site visit.
5. Networking is a key output of the SS, so try to ensure that there is enough time for this in the agenda. Arrange at least two social events.
6. Allocate time in the agenda for individual meetings, but also for group meetings/satellite sessions on certain issues – e.g. field workers, CHIM, etc. People can bid on certain free slots in the agenda.
7. Arrange a bursary fellow’s lunch, or another such type of activity for bursary fellows to get to know their peers.
8. Arrange an ethics clinic – but also encourage members of the MOPs to come forward with their issues and take part in the clinic.
9. Consider continuing with having a couple of hands-on ‘training’ type sessions – perhaps focusing on publishing & writing; and an actual grant writing workshop (where people bring their grant proposals for feedback)?
10. Reinstate the Critical Friends program – but this time maybe focus on pairing people up with general long-term mentors, and not just someone who will only give feedback on their presentation?
We hope to implement as many of these suggestions as possible in the 2018 Summer School which will take place in Oxford, UK in July.
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