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Thank you for your interest in our survey on citizen science for health. This page provides you with more information on how our team will use the data you share with us by answering the questions in this survey.
Citizen Science has great potential to contribute to society and to innovative research. It has come to be understood as an approach that involves citizens in knowledge production, valuing their multiple capacities to document, reflect and act upon pressing societal issues, and to generate outcomes and impacts that are well suited to specific local conditions.
Even though citizen and patient engagement in health research has a long tradition, citizen science is a relatively underdeveloped branch in the health domain. Traditionally, patients are often included in health research programming. However, their involvement is much less developed in domains like decision-making on specific research questions, in methodology development, data collection, analysis and the development of conclusions and recommendations, or in new role definitions. Yet, in recent years, a new generation of citizen and patient involvement in health research is growing. Sometimes their involvement is an implicit part of established programmes. At the same time a substantial amount of citizen engagement with health research occurs off the beaten institutional track.
As a testimony of the diversity of citizen engagement in health research, we witness, for example, citizens playing a part in research on public health issues, community health, fundamental health research, Quantified Self and Personal Health Science.
This survey aims to make the (inter)national diversity of Citizen Science in the Health domain more visible and identify possible avenues to strengthen its significance. More specifically, the purpose of this survey is to get a better view on:
- the diversity of stakeholders involved
- the diversity of projects that identify themselves Citizen Science for Health
- the conditions that hamper or facilitate their impact for science and society
- their needs for support.
The results of the study will be published.
We invite you to share this survey with stakeholders and groups in the health domain that you believe are conducting work (an activity, a project) that could be labelled as citizen science. This is all the more important as the survey aims to articulate the different voices and needs of stakeholders engaged in any form of citizen science in the health domain, and may spur the input of citizens and patients alike in health research, policy and practice.
This survey was created by members of the Working Group Citizen Science for Health, part of the European Citizen Science Association. An earlier version of the Survey was piloted in a workshop at the ECSA bi-annual conference in Trieste (2020), conducted by Gaston Remmers, Sabine Wildevuur, Martijn de Groot and Lea den Broeder. This very workshop was also the birthplace of the Working Group Citizen Science for Health. The Working Group has decided to deepen the survey and conduct it across a diversity of countries and stakeholders . The survey does not receive formal funding, and is conducted with the help of in-kind contributions of the members of the coordinating committee.
The survey has been approved by the ethical review board of the University of Twente (ethical approval #210928).
The survey coordinating committee consists of researchers and patients:
- Alexandra Albert – ExCiteS, University College London, UK. a.albert@ucl.ac.uk Languages: EN, FR
- Bastian Greshake Tzovaras – Centre de Recherche Interdisiciplinaire, Paris, France. bastian.greshake-tzovaras@cri-paris.org Languages: DE, EN
- Gaston Remmers, Foundation My Data Our Health (Amsterdam) & University of Twente, The Netherlands (Survey coordinator). g.remmers@mdog.nl Languages: NL, EN, ES
- Mic Starbuck, Chest Heart and Stroke foundation Scotland mic@e-starbuck.co.uk Languages: EN
- Jef Van Laer, Citizen Science Vlaanderen, Belgium. jef@scivil.be, Languages: NL, EN, FR
We have listed the countries of residence and languages of the authors so you are able to get in touch with someone in your own country and/or in your own language if you prefer. The survey is available in multiple languages.
Your responses to the questions in this survey are stored and managed by
Scivil
Kapeldreef 75,
3001 Leuven, Belgium
jef@scivil.be
If you have any questions on how survey data is managed, please contact Jef Van Laer (jef@scivil.be). This survey does not ask specifically for any data that could be used to personally identify you. If you feel like providing an answer to a question might reveal your identity against your will, please feel free to skip this question or stop filling in the survey.
Your responses are stored and processed anonymously by the authors of this survey, compliant with the EU’s General Data Protection Regulation. Your data will not be used for any purpose other than this survey. Your data will not be passed on to third parties beyond the members of the survey coordinating committee. Survey data will only be published in a de-identified and anonymised form.
If you want to be informed about the results of the survey you can leave your email address here:
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