Introduction: Marie-Louise Newell, Director: Africa Centre for Health and Population Studies
The Wellcome Trust workshop on “Science and Community – engage to empower” kicked off at the Africa Centre for Health and Population Studies situated in rural KwaZulu-Natal this morning. Situated as it is in the heart of the AIDS pandemic in South Africa, Centre Director, Marie-Louise Newell, explained the focus of the their research efforts were to improve understanding of HIV dynamics and the impact of ART roll-out, and to evaluate intervention programmes, among other things.
Nearly 20% of the adult population in the Hlabisa/Mtubatuba area between the ages of 15 – 50 are HIV infected. The proportion of people infected varies by age, with the highest proportion among women 25 – 29 years (nearly 50%), and among men 30 – 34 years about 30%. The Centre is supporting a Department of Health treatment and care programme started in 2004 but accelerated from 2006 with PEPFAR funding which takes place at primary health care clinics (as opposed to tertiary care institutions) in the area, which is quite unique. Now, nearly 6000 people are on ARV treatment.
“Public engagement for the Africa Centre is very important as it is situated right within the community with which it works. It is in our interests to make sure the community doesn’t get upset with us, because that would be the end of our work here,” said Newell. “We have very close links with the traditional authorities.”
Opening – Clare Matterson, Director, MSH Wellcome Trust
The Wellcome Trust supports areas of science that have potential for increasing health benefits for people and livestock, and also supports international networks and partnerships focused on problems of resource-poor countries.
“The Wellcome Trust approach is to support excellent research with excellent people – giving them additional resources and people. We back individuals who are already working in an area,” said Matterson. The Trust funds about 3000 researchers across 50 countries, with 5 major overseas programmes, in Kenya, Malawi, Thailand and Vietnam. The Trust’s funding amounts to about £500m per annum, with about £70 million p.a. for international activities.
In terms of public engagement in the UK, the Trust funds grants in science centres and museums, but there are also small community activities (“people awards”) which extend across the country. The grants are diverse, aimed at fostering an informed climate within which biomedical science can flourish. One project – a new publication aimed at very young people “Kaido” – wanted to develop activities for the very young; another was “teenology” where teenagers working with scientists developed a film exploring the changes in their lives from a social and physical point of view. The Trust does some of its own work through an adult-focused Gallery exploring the human condition, which has had 350 000 visitors during its first year.
“This workshop is the first of its kind for Wellcome as an effort to build networks and bridge the gap between what happens in the UK and its centres abroad. We hope this will be the start of a very exciting partnership and development,” said Clare Matterson.
Setting the Scene for engaging communities, policy makers and media – Simon Parry, conference convenor, Wellcome Trust
The key aim of the workshop, explained Wellcome’s Simon Parry to the 60 delegates attending the workshop, was to establish links with and between public engagement practitioners. “We also want to establish a network involving staff at the Trust’s major overseas programmes, holders of international engagement awards, and UK based grant-holders with an interest in global health. Another aim is to develop a shared understanding of the scope of the practice, and to identify key issues and needs of the group,” he said.
Parry asked delegates to look at look at words in different languages which describe science and community. If the words were inaccurate or not represented, the delegates were asked to jot them down on posters. A further ice-breaker was to get the group to draw their impressions of science and engagement with society.
Some questions for the group to discuss during the course of the three-day meeting included:
- do different types of research need different types of public engagement? When talking about the public, who are we talking about? How can stakeholders be identified?
- How can we evaluate the impact of public engagement activities: what measures can be used?
- How do we transfer the lessons learnt by practitioners between geographic or cultural contexts?
Four delegates from different countries were asked to illustrate science engagement with community:
Luisa Massarani from Brazil explained how the actions of scientists had influenced policy regarding stem cell research, ending two years of controversy. Two actions had particular impact: a letter sent by a group of science institutions reflected the public health need for this research to save thousands of lives. The 2nd action was during the voting process when scientists went to parliament with people with disabilities wearing T-shirts proclaiming “stem cell is hope” and “research can save lives”. The result was that 352 parliamentarians voted in favour of stem cell research while 60 voted against. Some scientists criticised the sensationalist approach, arguing that the call gave false hope without clarifying that some benefits still had to be seen. A scientist interviewed on this said: “We didn’t give false hope, the journalists did. It is their fault.” He published a paper which explained once the bill had been passed that results would only be seen in the future. Challenging the delegates, Luisa asked: “What do you think: Is any strategy good when promoting science?”
Latha Sekhar from India read a poem about the health-promoting berry of the Kani people. The plant was investigated, and a drug evolved. A company was enlisted to market the product. Agreements were drawn up to ensure the licence fee and royalty was shared with the Kani tribe, which was hailed by the UN as a good model of protecting and involving indigenous knowledge.
Kenya’s Oby Obyerodhyambo read a story about “this new disease, AIDS” which has no cure which reflected the disconnect between what scientists say, and what people understand. People say: “What is this disease – it is surely not new?” The scientists affirm it is new. “Where is it from? An American invention to prevent sex? Passed on by chimpanzees? Who has had sex with a chimp?” The researchers tell us to abstain from sex. “How can we do this, will that not finish us off anyway?” Researchers tell us that drugs have been found, called ARVs, but they are not a cure. “What are they, if they don’t cure? Why are people continuing to die, day after day, if there is this medicine available?”
Rebecca Gould, director of Tinderbox – Theatre Science in the UK, highlighted the evolutionary process of a play on chronic fatigue syndrome which affects about 1 million people in the UK. Originally based on the story of “Sleeping Beauty” where the prince’s kiss symbolised scientific intervention, the storyline didn’t work because the metaphor didn’t extend far enough or engage with the target audience as planned. A support group came to the rescue when a patient explained that her healing was “like losing a long-term lover” because the disease had been with her for so long. “This worked well because it was like a quirky love story. Metaphors help us to paint pictures in people’s minds which inspires them to investigate further. The audience had to work through the metaphor to understand the illness. This showed us that lots of theatre development work is needed to provide the right framework and message,” said Rebecca.
Posted by Greer van Zyl, Healthwrite