Alison Dunn
Public engagement with health research is about unlocking scientific inquiry rather than disseminating information. This was the key message to come out of a lunchtime event on 23 June at the Wellcome Trust, in London, to discuss the theme of the latest issue of Health Exchange: Engaging the Public in Health Research.
Sîan Aggett, Public Engagement Adviser for the International Engagement Awards at the Wellcome Trust began by presenting some of the Trust’s work in this area. The Engagement Awards fund projects which aim to open up dialogue between the field of science research and communities or the public. This type of engagement is not about one-way communication or health campaigning. It is rather a way to raise critical awareness of what health research is, and enable citizens to engage critically with science. It also allows scientists situate their research in the local context more thoroughly.
More than research dissemination
Sîan highlighted projects of special interest. One of them was a project in Kilifi, Kenya which engaged school children with science. This project has been particularly interesting because it demonstrates the power of partnerships. The aim of the project was to take science into schools to allow pupils to understand what science is and can do, and see for themselves who are the scientists. The planning process was participatory and involved the education authorities, teachers, parent groups and young researchers from across Africa. Activities included drama projects, inter-school drama competitions, school tours and participatory video where children made films about research facilities. Kenyan scientists visited schools and spoke directly with the pupils. Children saw Kenyan scientists who had been through the same education system as themselves, and this reversed their view of scientists as being white and western. They were inspired to understand science in a different way and some even aspired to becoming scientists themselves. Everyone – children, school teachers, scientists – was enthused by the project. A key outcome here was that pupils started to engage with science by being more curious about it: they were themselves using scientific inquiry.
Similarly, this was something that happened during a local language ‘Science Cafe’ in Uganda. Science Cafes are places where the public can gather and ask questions about aspects of science and research to scientists in an informal setting. Science Cafes are happening all over the world and are gaining momentum as a way for citizens to engage in a more neutral setting with research. In Uganda, the community members really owned their cafe, calling it ‘our cafe’. They asked specific questions; for example, they wanted to know how much alcohol was in their drinks, and what it did to their bodies and their health. This process of inquiry meant that the community members themselves were engaging not only with the science, but also the means of inquiry. This goes far beyond dissemination of research findings to a serious level of engagement.
Another project in Ecuador, run by Colombian researchers, opened up dialogue between health researchers and the community by using participatory video. Community members had been researched upon about parasitic diseases for over twenty years, and they felt it to be extractive with little dialogue. As a result they were distrustful of researchers and there was misconception, fear and frustration. The community received training and made films which helped them express this. The films opened up a space for dialogue. The process empowered the community to be able to ask the right questions to the researchers.
It is not only community members who need to be supported to become more open to scientific approaches. Scientists themselves are challenged in new ways to be open to public engagement and value what it can achieve. Very often the scientific community is detached from public engagement. Science and research is seen as valid because it is an academic endeavour in itself, rather than having any direct relevance to communities. Sometimes researchers need to ‘unfreeze’ their way of thinking about research in order to achieve this.
The boundaries of public engagement
A major thread to the discussion was: what is public engagement and where are the boundaries? This was an area that people returned to throughout the discussion. At moments, public engagement can be about reaching shared critical understanding between scientists and the community. Although, as one participant pointed out, this critical understanding is not necessarily seen as an achievement in itself by grassroots communities. Another question was about practice: how do you link public engagement projects with action on the ground, so that outcomes are clearly linked back to the community?
One participant suggested that when large-scale research projects are funded, they could include a mandatory element of public engagement. A researcher questioned this and suggested there are ambiguities which need to be considered. She asked if it was realistic to expect all research to include a public engagement component. It depends on the type of research being conducted. Importantly, scientists spend years building up a body of knowledge which is then applied to individual research projects, and it is critical to understand what you will communicate and share from all these years of research and knowledge accumulation. She also said that research can be hugely complicated when scientists from the North arrive in communities, take blood samples and fly home. Samples are important for bio-medical research but when there is no additional support to the community, it can be harmful.
Questions were also raised about the relationship to participatory action research, participatory communication and international development in general. There are occasions when the boundaries between public engagement and other approaches are blurred. One participant gave an example of the child-to-child approach which developed around a decade ago in international development. This is where children engage with other children in their communities, explores how older children can support younger children and also contains a research element.
Another discussion considered the role of accountability. Are scientists accountable to the community members they work with, and what are the mechanisms to allow this to happen? The topic of Community Advisory Boards or Community Ethics Boards raised some issues.
Community members are clearly involved in research, but do the boards constitute public engagement with health research? Or should these boards exist anyway and play their own role to support public engagement more broadly? Sometimes the boundaries are not clear.
Sustainability
How sustainable is public engagement? Are public engagement projects sustainable or are they just ‘moments in time’? This was a question from the floor that struck a chord. In the example of the science in schools project, the schools work is now rolled into the core budget of the research programme and the director of the research institute is fully supportive of the approach. The Science Cafe approach is also a more sustainable approach than others. Some cafes have funding, others are self-sustaining. Models where Northern cafes could help support southern cafes are being explored.
When the Science Cafe works well it can have far reaching results. In Nairobi, two dynamic young women run a Science Cafe and they choose the topics to be discussed. The public turns up to have engaging discussion with scientists. The women invite the media – BBC and local media – to sit at the edges of the meeting and listen. It is not a press conference, and the journalists are not able to ask questions; it is the public who ask the questions. In this case it is the cafe that triggers the news and there has been more media coverage on scientific and women’s health issues than ever before.
Some key points from the discussion were:
- Public engagement needs to do more than disseminate and communicate research; it needs to lead people to scientific inquiry.
- Public engagement is a two way process: communities need to be supported to engage with science and scientists need to be supported to engage with communities.
- The boundaries at the interface of public engagement, action research, and participatory communication are often blurred and more work could explore the relationships between them.
- It is important for public engagement to be more than a one-off project. Done well, it is owned by the community and can have far-reaching effects.
The Wellcome Trust encourages applications to their grants scheme from anyone interested in engaging the public in health research. This includes local and international research institutes, and intermediaries.
www.wellcome.ac.uk/Funding/Public-engagement/index.htm
Filed under: Public engagement in health research | Tagged: community engagement, health research, participatory research, public engagement, school children, scientists
