Studies into health and well-being appear highly suited to citizen science – the general public are all experts in a way, either as patients or as citizens wanting to stay healthy. Renske van Wijk from the University of Twente’s TOPFIT Citizenlab explains how researchers, citizens and third parties can get the most out of working together.
What does it mean to suffer from rheumatoid arthritis and feel tired so often? Can we learn more about this? How can technology be used to get in control of diabetes type 2? Or what’s needed for elderly people to age safe and healthy in their own neighbourhood? By answering those kind of questions, citizen science really shows its additional value to healthcare, explains Renske van Wijk. She is the coordinator of TOPFIT Citizenlab, an initiative by the University of Twente in collaboration with Saxion University of Applied Sciences, the Regional Community College of Twente (ROC van Twente), and with businesses, healthcare, civil society organisations and government institutions.
Since its inception in 2020 TOPFIT Citizenlab, financially supported by the Regio Deal Twente, has been studying solutions promoting the health of people living in the Dutch region of Twente. What’s remarkable is that citizens themselves are actively involved in the studies. TOPFIT Citizenlab projects focus on getting more insights in your own health and being more in control of your situation.
‘Prevention of disease and self-management for patients are getting more important in healthcare. That also means that healthy citizens or patients should get a more important role in research on these topics’, says Van Wijk. ‘Take the fatigue suffered by patients with rheumatoid arthritis. When you actively involve patients in formulating the questions and executing the study, you broaden the perspectives on health and well-being and you can answer questions that are relevant for them, for example to take control of their own situation. Health is more than just the absence of disease.’
Skills for citizen science
TOPFIT Citizenlab, coordinated by the Technical Medical Centre of the University of Twente, focuses specifically on the use of technology to improve health and well-being. ‘An app can help to develop a healthier lifestyle. Or in the project on rheumatic disorders, patients collect data about their fatigue themselves. That gives them a deeper understanding of their illness and what they could do about it.’ But smart technology is not always the answer, we found in our projects – it should fit the people and circumstances. It is important to find that out early in the innovation process.’
Of all the experiences Citizenlab has gained, one stands out. Being meaningful to citizens and society. The win for the researchers is the (exciting) route towards more societal impact. Therefore subsidy bodies more often stimulate these collaborations. What skills does citizen science call for?
To begin with, you need an open-minded attitude, Van Wijk explains. ‘Once you start designing your project with citizens and social partners you have to realize you will not know in advance exactly how your study will look like.’
Second, she points out, it is important to manage expectations. What do the different parties expect from each other? Citizen science calls for flexibility, trust and openness. ‘And it’s very important to remind yourself now and again: I may know a lot, but not everything’, Van Wijk adds.
Building trust
If you invite citizens and civil society organisations to participate actively, you must view them as equal partners in that dialogue. ‘We want to have an impact on society, not just on science. That can be achieved by listening carefully to local citizens, patients, the organisations that represent them and their caregivers.’
She has noticed that patients are sometimes reluctant to take part in a research project. ‘They question the value of their contribution and worry that research is the sole domain of scientists. But a few sessions in – when they have become familiar with the researchers and the project – they dive right in and can assume the role of co-researcher effortlessly.’ That said, you need to be careful not to be over-demanding, Van Wijk says. ‘Look at what your participants are capable and willing to offer. Cherish your relationship with them. Be secure with privacy and reliable in communication. That helps to build trust and mutual understanding.’
She also indicates that expectations can be too high about the duration and results of the research. ‘You need to manage those expectations. Patients might hope for quick results, whereas scientists often need more time to produce reliable answers.’
But Van Wijk admits that, at the same time, scientists on citizen science projects cannot take years to think about the project. ‘Working together in that sense means a little give-and-take and honest communication. And sometimes it is just not possible to study or resolve a particular societal issue – it’s a learning process that you embark on together.’
In the middle of Twente
TOPFIT Citizenlab not only strengthens the role of the University of Twente in the region, it also helps the collaboration with vocational and higher professional education. ‘The great thing about that collaboration is that it leads to practical applications and products. For example, we developed a cookbook for people with diabetes and ideas for tools for informal caregivers to help them talk at work about their situation so that it becomes easier for them to keep up their activities and stay healthy at work.’
Van Wijk also sees that citizen science has a real impact on shaping the students and researchers involved, not just through the collaborative spirit between university, higher and vocational education, but also through the commitment shown by citizens. ‘It is wonderful to see how students and researchers in citizen science projects learn from each other and develop new skills.’
For the time being, TOPFIT Citizenlab will continue building its network to help citizens, researchers, care organisations, businesses and civil society organisations connect in relevant and innovative projects. ‘We actively seek to collaborate with other disciplines’, says Van Wijk. ‘We will certainly continue to promote and support those collaborations and expand our knowledge, expertise and network further. We share our best practices. The funding through Regio Deal Twente has come to an end, but the University of Twente and other involved knowledge institutions are investing to retain TOPFIT Citizenlab for the region and to continue developing citizen science for health.”