One of my proudest career achievements was persuading the Wellcome Trust to support biomedical ethics and public engagement internationally*, mainly in low to middle income countries. Arguing the ethical imperative for public engagement as a component of sound research, and the need for equity in public engagement practice across the nations and populations where Wellcome has a research presence, I also strongly believed (and still do) that we, in the UK, have much to learn from public engagement practices in diverse global settings.
I was therefore delighted to re-engage with this international community of practice at the Global Health Ethics and Engagement Network meeting in Kenya in September 2016. Led by the Ethox Centre, the network comprises inspirational ethics and engagement practitioners and researchers from across the globe, including (but not limited to) Wellcome’s global health research centres: Africa Health Research Institute; Mahidol Oxford Tropical Research Unit; KEMRI-Wellcome Trust Research Programme; Malawi-Liverpoool-Wellcome Trust Clinical Research Programme; Wellcome Trust Brighton and Sussex Centre for Global Health Research; Oxford University Clinical Research Unit. No less than 60 countries were represented at the meeting.
The meeting explored several themes:
Using as a stimulus the Nuffield Council on Bioethics’s work on Children and Clinical Research, involving young people in research highlighted:
- The development of a young person’s advisory group to the main research hospital in Cambodia;
- Ethnographic and social scientific research into children’s understandings of clinical research in Myanmar and Malawi;
- The extensive schools engagement carried out by KEMRI-Wellcome in Kenya and many other global health research programmes;
- Research into Kenyan views on if, when and how children should (or shouldn’t) be actively involved in research.
Using contexts from Kenya, Thailand, Vietnam, Malawi and the UK, including examples of engagement with migrant populations, female sex workers, rural communities and undernourished children, the vulnerability theme explored:
- What constitutes vulnerability in research engagement?
- What are our moral obligations in terms of engaging vulnerable groups?
- Are children automatically a vulnerable population?
- Who is vulnerable? Clearly, some of the people we engage, but also the fieldworkers, engagement practitioners and researchers?
- Are there transferable ethical and/or practical approaches to engage with vulnerable groups?
Consent is an enduring ethical complexity for both research and engagement practice. Presentations from New Zealand, Uganda, South Africa, Ethiopia, Rwanda and Thailand addressed:
- What constitutes valid consent and how does engagement contribute to and/or inform the process? For whom (eg. Research Ethics Committees, participants, families and friends, frontline workers, funders, principal investigators)?
- What are consent and engagement considerations in large-scale health surveillance studies?
- How do we strengthen the processes for explaining and translating research terminologies and concepts (eg. Placebo, randomisation)?
- Factors affecting consent to surgical research;
- Challenges for engagement and consent related to complex research (eg. HIV, genomics);
- Navigating rumours, stigma and jealousy;
- Data sharing policies and implications for consent and engagement;
- Consent and engagement in pragmatic clinical trials (trials that evaluate the effectiveness of interventions in real-life routine practice conditions rather than in ‘optimal’ conditions).
Finally, discussions moved from engagement as an essential part of the ethical conduct of research towards approaches that broaden scientific literacy, promote participatory conversations and ultimately influence research. This included – in both urban and rural areas – the use of science cafes, community debates, film shows, participatory community theatre, spiral walking, radio, puppetry and visual art; the important role played by frontline workers (fieldworkers, engagement practitioners) and their capacity development needs; working with Community Advisory Boards; and much much more.
Witnessing the incredible range and creativity of engagement approaches, often in challenging circumstances was humbling and addressed the spectrum of engagement:
- Engagement as an essential component of ethical research: for example the Community Advisory Boards that are an integral part of many of global health research groups;
- Engagement to promote scientific communication, literacy and critical thinking: for example, KEMRI-Wellcome’s extensive schools engagement programme;
- Science as culture: for example, the creative use of participatory theatre to explore scientific research in rural and urban communities in South East Asia;
- Engagement informing research: for example, AHRI’s participatory spiral transect walking, listening to communities to inform research programmes before they start.
Reflecting on the meeting, common themes, many with resonance in the UK, also emerged:
- Engagement and involvement of people in research, with diverse audiences and a variety of methods, is alive and well, globally (though it is by no means common practice everywhere);
- Some engagement practices across different contexts are similar and/or transferable; others unique to specific settings;
- The interdisciplinary and thoughtful approach, often evidence-based, ethically and social scientifically informed, taken to engagement in many international settings;
- There is a growing and thriving community of engagement practice, globally, with whom we, in the UK, should be engaging more.
Nevertheless, common challenges remain, including (again, many with resonance in the UK):
- How to strategically link the various aspects of engagement across its spectrum of audiences, aims and practices (eg. linking study-specific engagement with, for example, wider cultural initiatives);
- Securing buy-in from institutional and wider stakeholders about the value of engagement, in all its guises;
- Active involvement of communities in early and late stages of the research cycle (eg. Setting research agendas, feeding back research results to participants and communities);
- How to balance making science ‘fun’ and engaging, and taking steps to ensure social responsibility and social justice within engagement with research;
- Engagement practitioners (eg. Research fieldworkers and creative practitioners) are often in a unique position with multiple responsibilities that require thoughtful management;
- How to recognise engagement activities, and the learning derived from them, is difficult. Publishing is one option – perhaps, via this blog piece, I can persuade the journals Research for All or Research Engagement and Involvement to consider a special issue in this area? Notwithstanding that it is also important to publish engagement pieces in scientific journals, are there also other alternative ways of recognising value, aside from publication?
- Engagement can include elements of ‘being a good neighbour’ eg. As an employer and often a healthcare provider within a geographic area, offering ‘collateral’ benefits to local communities such as training courses not directly related to research outputs.
If you want to find out more about engagement with research in low to middle income countries, I encourage you to visit Ethics & Engagement Across the Wellcome Trust Major Overseas Programmes and MeSH – the global health community engagement network, and other online communities (eg. Science Communication Africa’s Facebook page)
Coming to this meeting was undoubtedly one of the highlights of 2016 for me. It also felt like coming home. Thank you for inviting me.
*In 2002, the Wellcome Trust Biomedical Ethics in Developing Countries funding scheme was launched, followed in 2005 by the International Engagement Awards. Funding for international ethics and public engagement activities can now be sought as part of the Humanities and Social Science funding, Public Engagement Fund and Public Engagement within Research grants.