4. Citizen science and health I
Parallel session | Chairperson: Marzia Mazzonetto | Monday, 07 September 2020 | 12:00-13:00
12:00-12:15 | 4.1 Serious games and public health citizen science
Author/s: Ann Borda, Andreea Molnar and Patty Kostkova
Presenter: Ann BordaSummary:
In this study, serious games are explored in their support of public health outcomes through public participation, such as citizen science.
12:15-12:30 | 4.2 Patient science as a new citizen science approach? When fragile groups such as chronically ill people become citizen scientists
Author/s: Nils Heyen
Presenter: Nils HeyenSummary:
Citizen science in health-related fields usually follows a crowdsourcing approach. By contrast, we set up a citizen science project on a much higher engagement level. Here, a team of professional and citizen (patient) scientists has jointly planned, implemented and evaluated a scientific study on a chronic disease from which the patient scientists themselves suffer. In my presentation, I will briefly introduce this “Patient Science” project and indicate some conceptual differences to traditional participatory approaches in health research. After reflecting on the implications of involving chronically ill people, I will finally discuss the benefits and challenges of the patient science approach.
12:30-12:45 | 4.3 The value of citizen science in a study on chronic pain on the citizen science platform ‘Crowdience’
Author/s: Serena Daalmans, Ruben Blezer, Giulieta Nalbandyan and Kirsten Bevelander
Presenter: Kirsten BevelanderSummary:
Citizen science projects requesting citizens to assist in designs that improve their health (care) are scarce. Additionally, there is debate about the value of citizen science. This study explored crowdsourced information and traditional focus group sessions. Chronic pain patients were asked to share how they deal with chronic pain, how professionals can gain better insights into their health situation and how their ideal care house would look like. Findings of the offline focus group sessions and online crowdsourced information are presented, showing the value of citizen science for health care. Info about the crowsourcing platform 'Crowdience': https://www.youtube.com/watch?v=4edo9zXPpqw and https://www.youtube.com/watch?v=Nf5klFxUVyA
12:45-13:00 | 4.4 Investigating the process of ethical approval in citizen science research: the case of environmental epidemiology
Author/s: Antonella Ficorilli, Giovanni Maccani, Mara Balestrini, Annibale Biggeri, Bruna De Marchi, Florence Gignac, Regina Gražulevičienė, Gerard Hoek, Tjaša Kanduč, David Kocman and Xavier Basagaña
Presenter: Antonella FicorilliSummary:
The presentation provides information about the strategies envisioned by CitieS-Health project to address the ethical issues identified. For instance the adoption of a two-step ethical process and the introduction of new elements in the study protocol. Some relevant feedback of Ethics Committees that emerged during the process of ethical approval will be illustrated. This feedback needs to be investigated as it appears to be a complex issue, considering the current legal rules and the diversity among European countries concerning Ethics Committees. Issues such as how to address the shared responsibilities from a legal point of view should receive special attention.