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How citizens’ feedback can shape health research

New ways of engaging health research for those that will ultimately benefit from its outcome

Increasingly, health researchers are likely to engage with the public before their project has been completed. Typically, this takes several forms: involving citizens in project design, facilitating crowdsourcing and genuine two-way dialogue during research. In addition, communicating complicated results clearly – to a representative sample of the public and in a targeted manner – can also be a beneficial form of public engagement.

By involving citizens more systematically, scientists hope to involve the people who will ultimately be directly affected by the outcome of their research. In this article, we explore three case studies of how best to involve citizens so that they have more of a say on health research than previously. This piece is based on the opinions of the organisers of three sessions related to healthy populations at the forthcoming ESOF 2016 conference, due to be held in Manchester in July 2016.

Changing culture and valuing impact

Improving interaction between research and society requires cultural change by “establishing institutional settings which encourage, support and recognise the worth of entering into conversations with the wider public,” says Robert Kirk, lecturer in medical history and humanities at the Centre for the History of Science, Technology and Medicine (CHSTM) in the University of Manchester, UK. He is also co-organiser of the ESOF2016 session on “Making a multispecies society” which will discuss the contribution of non-human lifeforms to human health and wellbeing.

Kirk believes this engagement should be about more than diffusing results at the end of a project as “this creates a linear trajectory; more a monologue than a dialogue, leaving little opportunity for the public to inform the direction or type of research.” To address this, Kirk advocates “thinking more creatively, planning engagement activities which occur at different stages of the research project lifecycle and communicating research as it is in progress.”

He also explains that over-analysing research ‘impact’ can sometimes cause difficulties. Particularly, when asking “how does one measure the value of a conversation? Of a new idea? Of changing an idea or the way we see the world? Of inspiring new questions and encouraging curiosities?” He adds: “If we had more faith in the worth of engagement between researchers and wider society and less demand to prove that worth, then dialogue between researchers and citizens would flourish.”

Better project design, clearer communication

Another aspect of health research is pertaining to the wellbeing of people. For example, the JRC are organising the ESOF2016 session “Tattoos – not just body art?”, which will discuss how research can contribute to the well-being of consumers in the tattoo industry.

The organiser of the session, has views on how best to improve the interface between scientists and citizens. “One practical way [of improving interaction between research and society] is to involve citizens more actively in the research itself, especially those whom the area of research touches directly,” says Ciarán Nicholl, head of the public health policy support unit at the European Commission Joint Research Centre (JRC), Brussels, Belgium.

Sometimes it helps to involve people upstream. “We have found inviting participation of patient organisations and patient advocacy groups into the design stage of research projects an effective means of steering the work,” Nicholl points out. He adds: “We have also found it very effective working with schools”, explaining that “activities in which school children are involved automatically win the attention of their parents and families.”

But he also believes that results still need to be communicated effectively. The challenge is “to describe complex scenarios in a stimulating way to non-experts in the field, without overburdening them with all the specific details, no matter how important,” he notes.

A representative crowd

Harnessing the enthusiasm of lay people for health research could, for example, be beneficial when investigating the human biome – the collection of microorganisms living within our human body. This topic will be the object of an ESOF2016 session entitled “Me and my microbes”.

Under the umbrella of the my.microbes project, researchers have adopted “a crowdsourcing model where ordinary people can contribute,” explains Peer Bork, strategic head of bioinformatics at The European Molecular Biology Laboratory (EMBL) in Heidelberg, Germany, who organises the session. Bork acknowledges that this approach has not been without its difficulties, including ethical and legal issues, saying “we don’t have the means as scientists to raise awareness.” Instead, he believes that, where possible, “facilitating of scientific crowd sourcing should be taken up by funding bodies.”

Bork also believes that crowd sourcing can lead to more representative feedback and participation. As he explains, “anti-animal research movements might not reflect the opinion of the total population for example, nor is philanthropic support of selected projects. The more centralised and facilitated crowd sourcing I propose might improve this situation, although some bias towards “sexy” and applied projects are still expected.”

Next steps

How previous biomedical research initiative have successfully engaged with the public will be discussed during an ESOF2016 session entitled ‘Public involvement in biomedical research: a science revolution‘ and organised by Bella Starling, from Central Manchester NHS Trust & University of Manchester, UK. For example, initiatives like–whereby medical conferences only become accredited if they incorporate the experience of patients as experts in living with their condition–are encouraging. However, there is still much to be done to embed public involvement in science. But witnessing a greater level of engagement of citizens who will ultimately benefit from the outcome of the research at various stages of the process is very encouraging.

Featured image credit: via Shutterstock

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Hywel Curtis

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