How citizen science can contribute to new “gold standards”

Reported by Matthias Meller, CSaP Policy Intern

Babies do not wait for experts’ guidance nor a pandemic to be over, they want to be born. Thus, in the early days of the COVID-19 crisis, a critical question emerged: How could health services continue to provide important care in areas such as in obstetrics, whilst minimising the risk of COVID-19 infection? Moreover, how could healthcare providers rapidly improve care procedures and engage with expertise while operating under pandemic-imposed constraints? In the fourth Policy Fellow seminar on Citizen Science Ruth Kern from THIS Institute at the University of Cambridge reflected on these questions while sharing the findings from a successful citizen science project that grappled with this topic.

At the outset of the COVID-19 pandemic in March 2020, THIS (The Healthcare Improvement Studies) Institute put many ongoing research projects on hold, in order to focus on responding to the emerging crisis. The team’s attention was drawn to a pressing question faced by their NHSE colleagues: How could health services continue to provide the best possible care while minimising the risk of infections for staff and patients alike?

THIS Institute, established in 2018 at the University of Cambridge, with a £42 million grant from the Health Foundation, aims to strengthen the evidence base for improving the quality and safety of healthcare in the UK. Engagement with the users and practitioners of health services is central to this work, due to the particular knowledge and lived experience that they bring. This process is facilitated by the institute’s dedicated online research platform Thiscovery.

When new procedures and processes were drawn up as part of the rapid response to COVID-19, the necessary expertise was not “available to everybody making those local decisions”, so the institute put together a number of fast-moving research projects to fill this gap. Built around the question “Can you build an improved process collaboratively engaging diverse expertise — and fast?” they focused specifically on managing obstetric emergencies as “babies still need to be born on a fairly regular basis”. In response to a video put together to demonstrate one possible way of managing such an emergency, 100 participants from three groups, maternity professionals, infection prevention and control specialists, and human-factors engineers, made 900 individual suggestions for improving the practice shown in the video. With the facilitation by the project team, a consensus was reached on 16 recommendations. These were compiled into a best practice video which has been viewed more than 15,000 times. The video has been shared by NHS Resolution and a paper describing the process has been published by BMC Medical Research Methodology.

What can policy learn from this case study for the practice of citizen science? From Ms Kern’s reflection and the ensuing discussion, the importance of THIS Institute acting as an intermediary and “to create science with the groups affected” stood out. Capturing the greatest possible diversity of personal knowledge and experience is thus essential to the credibility of citizen science. Doing research online such as through the Thiscovery platform can greatly improve the accessibility of citizen science research and can substantially contribute to the diversity of experiences captured by research. At the same time – and this is the approach that renders it different to other engagement work – THIS Institute guarantees robust methodologies and strong scientific methods in all its citizen science research. “We're trying to create evidence that policymakers and practitioners can rely on to make decisions that they need to make,” says Ms Kern, “but in doing that, to bring in the greatest possible breadth of opinion and experience.”

Organised exclusively for CSaP Policy Fellows and Continuing Fellows, this three-part seminar series on citizen science runs alongside an edited collection, produced in collaboration with the Expertise Under Pressure research project: Future directions for citizen science and public policy. This collection of essays, created by leading policy makers, practitioners, scientists and scholars, will showcase good practice and aim to set out the potential for citizens to contribute more effectively to policy making. The collection will be open access, freely available online and launched at the CSaP annual conference in June 2021.