Citizen science for health

Citizen science
for health

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Citizen science for health

Health is relatively under-represented in citizen science, despite the fact that it is a diverse and promising domain. Citizen science has great potential to contribute to innovative health research, as well as to society. 

Looking at citizen science from different levels of participation, and different types of health research, is helpful to understand the variety of research projects. Traditionally, patients are often included in health research programming; however, they are hardly or not at all engaged in decision-making on specific research questions, in methodology development, data collection, analysis and the development of conclusions and recommendations, nor in new role definitions. 

In public health research, citizens are sometimes included in participatory action research, leading to responsive policies and interventions, as well as to citizen empowerment. However, such research is seldom framed as citizen science, and within public health research such (mainly qualitative) methods have less status and influence compared to expert-based epidemiological approaches.


Gaston Remmers

Mijn Data Onze Gezondheid

Sabine Wildevuur

University of Twente

Martijn de Groot

Radboud Reshape

Working group

  • Alexandra Albert
  • Ann Borda
  • Bastian Greshake Tzovaras
  • Diana Reinoso
  • Federica Righi
  • Hai-Ying Liu
  • Ilaria Leggeri
  • Isabelle Bonhoure
  • Kris Bevelander
  • Margaret Gold
  • Maria Rosa Mondardini
  • Mic Starbuck
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Activity plan

The process principles of this working group are grounded in the dynamics of a community of practice:

(1) Those who wish to bring an issue further, convene and prepare a session through the working group.

(2) The working group management establishes a simple rhythm of online meetings.

(3) The working group will operate a newsflash to update members on activities and news.

(4) The working group will establish a core team to lead it, which will include at least one researcher and one citizen.

It is likely that activities will include subgroups working on:

– shared values

– (open) data and data sharing

– ethics

– extending the survey that was initiated at the ECSA 2020 conference.

Please also see our report on the ECSA 2020 session on citizen science and health.

Past achievements

This is a new ECSA working group, formed in 2020.

How to get involved

To join this working group, please contact the chair by email, outlining your experience and which activities you are interested in.