Teen citizen scientists are giving us inside knowledge to fight disease

In the world of public health, important information can be hard to obtain. For example, we know children drive many infectious disease epidemics and infection levels often decline during school holidays. However, finding out how much children really change their behaviour over time, and what effect could it have on outbreaks, is much more difficult. But what if the children themselves could help gather the data?

To find out more about populations – and the diseases that affect them – public health researchers are increasingly turning to new sources of data. Some groups have used mobile phone data to map the spread of malaria. Others have analysed Twitter posts to understand attitudes to vaccination.

Sometimes the public takes on an even more prominent role, becoming an active part of a research project. These “citizen scientists” are helping researchers to get at hard-to-access information and find out what it could mean for our health.

Schools and social contacts

From measles to influenza, school children – who interact with more people than adults – play an important role in disease transmission. The challenge is to find out how children interact and travel and how much these patterns vary.

Over the past few years we’ve worked with schools to survey pupils’ travel and social contact patterns. Rather than rely on us academics to run everything, we’ve instead encouraged pupils to help design the surveys, collect the data and analyse the results.

There are several advantages to having pupils on the research team. When designing a survey, they can advise on what questions will be relevant and point to any potential pitfalls in collecting responses. With their inside knowledge they can also help explain any outlying results.

Including pupils in the research also makes it possible to conduct projects on a bigger scale. Instead of being limited to one-off surveys in a few classes – as a team of academics might be – groups of pupils can carry out larger studies over a longer period.

Social contact patterns in a secondary school year group. Each point is a participant, and lines represent a mutually reported contact.Data: London School of Hygiene & Tropical Medicine

It isn’t just school pupils that are taking part in citizen science. Flusurvey collects data by crowdsourcing volunteers’ symptoms online (you can sign up here). One of the drawbacks of traditional, GP-based surveillance is that when people suffer from flu symptoms, they often self-medicate (perhaps just staying in bed) rather than visiting a GP. As a result, influenza levels in the UK are often under-reported.

In contrast, Flusurvey asks volunteers to report online how they are feeling each week during winter, whether they are suffering from flu-like symptoms or not. Using this data, it is possible to map how flu is spreading in the UK and identify particular groups or areas that are more prone to illness.

Rates of Influenza Like Illness (ILI) Reported to Flusurvey during December 2014Flusurvey.org.uk

Obstacles and opportunities

One of the challenges we face with any long-term public research is keeping the participants – and the researchers – engaged. As well as training school pupils in the scientific method, we’ve found it is important to show why the research will be useful and explain how pupils can improve their chances of running a successful project.

There are similar obstacles for Flusurvey. We’ve found that a number of participants sign up when they are suffering, but stop reporting once they have recovered. It’s just as important to know when people are feeling fine, so we can work out the relative level of infection, but we do not always capture this data. We therefore need to communicate why we need such information and work to prevent participation fatigue.

It can also be difficult to collect a representative sample of the population. For instance, many Flusurvey participants are women aged 18-44 based in London. Likewise, schools in different social and geographical areas may produce very different results. When analysing the data, we must take such biases into account.

Despite the limitations of citizen science projects, they can be a powerful way to collect information about otherwise hard-to-reach groups. As a result, such methods are being used across the globe. Flusurvey is just one part of a Europe-wide initiative to monitor flu trends – and researchers in the US are running health surveillance projects such as Healthmap and Flu Near You.

Such research is also spreading beyond academia. Increasingly, governments are using information gathered from these projects for health planning. Flusurvey feeds directly into Public Health England’s weekly surveillance of influenza – and the data from the project contributed to the UK decision to introduce flu vaccination in young children.

Other benefits are likely to emerge as the projects grow and develop. But one thing is already clear: when working on public health, researchers – and governments – can often benefit from the public’s help. And by turning children into citizen scientists, we could be inspiring the next generation of researchers.

Adam Kucharski receives funding from the Medical Research Council and Wellcome Trust.

Clare Wenham receives funding from EPSRC IRC i-sense and Wellcome Trust.