Getting people actively involved in research into care, health and wellbeing – that’s TOPFIT Citizenlab’s mission. TOPFIT Citizenlab is a three-year research and innovation programme in which local Twente citizens, healthcare professionals and businesses will work together with UT and Saxion scientists to develop and implement technological health and care innovations. To staff this programme, UT and Saxion are looking for twelve new colleagues.
We need more human-centred research into health and wellbeing – research in which regular people play a much more active role. But how do we make that happen? That’s one of the main questions researchers will try to answer as part of the TOPFIT Citizenlab innovation programme. People are being given – and are demanding – an increasingly central role when it comes to their own health and wellbeing. Where patients used to have a more passive role in medical research, and even in their own treatment, now we see a clear trend toward shared decision-making and patients actively monitoring their own health. At the same time, there is a need for people outside the world of science who are willing to become more involved in medical research, either by actively contributing to research or by conducting research themselves. “Even though people are being given more and more control over their treatment in various ways, doing the same with research still presents a number of challenges,” says project leader Renske van Wijk.
The TOPFIT Citizenlab programme is the Netherlands’ first large-scale citizen science project in the field of medical research. Citizen science is research in which non-scientists play an active or even a guiding role. It’s an approach that has already been commonly applied in other areas of research, but so far medical research has lagged behind. Well-known examples of citizen science are the Naturalis studies on biodiversity, such as Nederland Zoemt (The Netherlands Is Buzzing). In addition to generating an enormous amount of data, they have proved to be a great way to involve people in scientific research.
The research into and development of a citizen science method for technological innovation in healthcare is still in its infancy. At the TOPFIT Citizenlab, steps will be taken to catalyse progress in this field through a number of pilots. The starting point for each of these pilots will be the perspectives of the participating citizens.
In the pilot project on lifestyle interventions for people with diabetes, for example, the central focus will be on participants’ health. The informal care pilot, on the other hand, will mainly be concerned with their working environment, while the research on how HandScan technology can be used in rheumatism treatment will concentrate primarily on the role citizens can play in technological innovation.
As Sabine Wildevuur, Director of UT DesignLab, explains, “The TOPFIT Citizenlab will bring a truly human-centred approach to healthcare within reach. This will mark the first time that citizen science in healthcare research has been explored on this scale, using so many different approaches, all of which centre around the individual.”
Jan Jukema, lecturer in nursing at Saxion University of Applied Sciences, agrees: “Working together with – and for – citizens on this scale in the field of prevention and health research is a unique opportunity. This project is a perfect fit for Saxion, as we have practice-oriented students and research staff in both healthcare and technology.
The Citizenlab programme has been made possible within the framework of the Twente Region Deal, which brings together contributions to Twente’s local economy from stakeholders in the region, as well as from national and provincial government. “Because we really see this as a regional project, we’re working together with a very broad group of partners, including our three main knowledge institutions (ROC, Saxion and UT), various care institutions, public organizations and industry,” says Van Wijk.
The deal provides funding for twelve new positions, six at UT and six at Saxion. “At UT, there are postdoc positions in the philosophy and ethics of citizen science, the implementation and optimal use of healthcare technology, sustainable innovation, and data science,” says Van Wijk. “At Saxion, there are positions in teaching and research, focusing on topics like the development of three types of citizen lab, in addition to professional training programmes on how to use innovative technology. The TOPFIT Citizenlab is looking to build a team that can join forces with local citizens to make a fundamental contribution to citizen science in the field of health and wellbeing, while at the same time improving health in the region. Twente is set to become a unique test lab for citizen science!”