TOPFIT CitizenLab – Citizen Science for Health

Next to the Pharaon project, I am also involved in the research and innovation programme TOPFIT CitizenLab. This 3-year programme is a collaboration between University Twente, Saxion University of Applied Sciences, ROC van Twente and several other partners, such as my employer Roessingh Research & Development (RRD), Ziekenhuis Groep Twente (ZGT), Demcon, Vitaal Twente, Technology & Care Academy (TZA), Insights Zorg, and others.

TOPFIT CitizenLab is powered by the Twente Regional Deal and receives financial support by the Central Government’s Regional Budget, the Province of Overijssel, the Region of Twente and the Twente Board.

Aim of TOPFIT CitizenLab

TOPFIT CitizenLab aims to introduce and enable Citizen Science for Health in the Netherlands, specifically in region Twente. In the coming years, CitizenLab aims to foster a collaboration between healthcare professionals and researchers, citizens and patients (organisations), healthcare and welfare organisations, technological companies, municipalities and employers to develop a ‘citizen health science’ programme. The special focus is to follow the principles of Citizen Science, in which citizens are not to be considered respondents or participants in studies, but partners who together with scientists answer real-world questions. Groups of citizens and patients contribute to research into the added value of technological innovations to health and the influence on healthy behaviour and lifestyle in CitizenLabs.

What is Citizen Science?

The Green Paper on Citizen Science for Europe defines Citizen Science as follows:

Citizen Science refers to the general public engagement in scientific research activities when citizens actively contribute to science either with their intellectual effort or surrounding knowledge or with their tools and resources. Participants provide experimental data and facilities for researchers, raise new questions and co-create a new scientific culture. While adding value, volunteers acquire new learning and skills, and deeper understanding of the scientific work in an appealing way. As a result of this open, networked and trans-disciplinary scenario, science-society-policy interactions are improved leading to a more democratic research based on evidence-informed decision making.

The European Citizen Science Association1 set out some key principles of what underlies good practice in Citizen Science:

  1. Citizen science projects actively involve citizens in scientific endeavour that generates new knowledge or understanding.
    Citizens may act as contributors, collaborators, or as project leader and have a meaningful role in the project.
  2. Citizen science projects have a genuine science outcome.
    For example, answering a research question or informing conservation action, management decisions or environmental policy.
  3. Both the professional scientists and the citizen scientists benefit from taking part.
    Benefits may include the publication of research outputs, learning opportunities, personal enjoyment, social benefits, satisfaction through contributing to scientific evidence e.g. to address local, national and international issues, and through that, the potential to influence policy.
  4. Citizen scientists may, if they wish, participate in multiple stages of the scientific process.
    This may include developing the research question, designing the method, gathering and analysing data, and communicating the results.
  5. Citizen scientists receive feedback from the project.
    For example, how their data are being used and what the research, policy or societal outcomes are.
  6. Citizen science is considered a research approach like any other, with limitations and biases that should be considered and controlled for.
    However unlike traditional research approaches, citizen science provides opportunity for greater public engagement and democratisation of science.
  7. Citizen science project data and meta-data are made publicly available and where possible, results are published in an open access format.
    Data sharing may occur during or after the project, unless there are security or privacy concerns that prevent this.
  8. Citizen scientists are acknowledged in project results and publications.
  9. Citizen science programmes are evaluated for their scientific output, data quality, participant experience and wider societal or policy impact.
  10. The leaders of citizen science projects take into consideration legal and ethical issues surrounding copyright, intellectual property, data sharing agreements, confidentiality, attribution, and the environmental impact of any activities.

Citizen Science projects cover a very diverse range of topics and the degree of participation by citizens can also vary a lot2. In can range from collecting data (as is quite common in ecology and environmental science) to projects that are initiated and led by citizens. Shirk and colleagues3 describe five types of public participation in scientific research:

  • Contractual projects, where communities ask professional researchers to conduct a specific scientific investigation and report on the results;
  • Contributory projects, which are generally designed by scientists and for which members of the public primarily contribute data. In other words: citizens are asked by scientists to collect and contribute data and/or samples.
  • Collaborative projects, which are generally designed by scientists and for which members of the public contribute data but also help to refine project design, analyze data, and/or disseminate findings. Members of the public assist scientists in developing a study, collecting and analysing the data for shared research goals.
  • Co-Created projects, which are designed by scientists and members of the public working together and for which at least some of the public participants are actively involved in most or all aspects of the research process.
  • Collegial contributions, where non-credentialed individuals conduct research independently with varying degrees of expected recognition by institutionalized science and/or professionals.

Structure of TOPFIT CitizenLab

The project as such is lead by a project management teamt consisting of Arthur Burghouts (Insights Zorg), Renske van Wijk (University of Twente), and Mariska van den Berg (University Twente).

The project is divided in activities and pilots, which inform each other.

Project overview with activities and pilots

Pilot 3: Citizens and new Technology

I am mainly involved in Pilot 3, which focuses on Citizens and New Technology. The team so far consists of the following colleagues:

The goal is to understand the optimal way to develop and evaluate technology and to embed technology in the service model using a citizen science approach. Citizens are important to be part of all phases in the product:

  • Concept
    What is the problem? What are the needs? How to reach citizens? What data is relevant for personalisation of medical technology? How to incorporate citizen-knowledge?
  • Prototypes
    What do citizens think about the use and the usability? Does it connect to their needs? Does it work? What are the expected (clinical) effects or health benefits for citizens? How can the prototypes be improved?
  • Product
    Impact assessment: What are the (clinical) effects and citizen-relevant effects? What is the willingness-to-pay of citizens for non-health outcomes? Implementation: What are business models and implementation strategies to achieve securing medical technology in the region?

Participatory approaches in health research and technology development for prevention and healthy lifestyle are quite common (e.g., user centred design, participatory design, action research, patient and public involvement) but not in impact assessment. Research activities within pilot 3 are guided by the question: what would be the added value of adopting a Citizen Science? Use cases involving health technology in various stages of development will be carried out to investigate this question, to provide lessons learned and to contribute to other activities in CitizenLab.

Let’s connect

Footnotes

  1. European Citizen Science Association, Working Group ‘ Sharing best practices and building capacity’, Ten principles of citizen science. 2015. Avaible in various languages here.
  2. Eitzel, M. V., Cappadonna, J. L., Santos-Lang, C., Duerr, R. E., Virapongse, A., West, S. E., … Jiang, Q. (2017). Citizen Science Terminology Matters: Exploring Key Terms. Citizen Science: Theory and Practice, 2(1), 1. DOI: http://doi.org/10.5334/cstp.96
  3. Shirk, J. L., H. L. Ballard, C. C. Wilderman, T. Phillips, A. Wiggins, R. Jordan, E. McCallie, M. Minarchek, B. V. Lewenstein, M. E. Krasny, and R. Bonney. 2012. Public participation in scientific research: a framework for deliberate design. Ecology and Society 17(2): 29.
    http://dx.doi.org/10.5751/ES-04705-170229
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Erwartungen und Erfahrungen mit für Patienten zugängliche elektronischen Gesundheitsakten (Kurzfassung meiner Dissertation)

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