Author/s: Gaston Remmers, Anje Te Velde, Dennis Zeilstra, Jan Houtveen, Aletta Kraneveld, Jos Bosch, Henk Duinkerken, Pieter Pekelharing, Kathelijne Dik, Isolde Besseling, Kiauw de Munck-Khoe, Marjan Schellinger, Jako Burgers and Karen KnippingPresenter: Gaston Remmers
MyOwnResearch is a large, award-winning Dutch patient-led research project, started in 2018, that aimed to develop a new research protocol enabling collective knowledge development out of individual citizen-designed health experiments. At present, the vast majority of these experiments cannot be used by scientists due to a supposed lack of scientific rigor. On the other hand, citizens do not fit in the typical randomized clinical trials required by most medical research. The MyOwnResearch consortium has designed a pathway that answers to the requirements of research and patients. This pathway challenges lots of assumptions in current health research design, and hence the project has met with considerable resistance from the traditional medical health research infrastructure, with issues ranging from methodological design, ethics of patient protection and empowerment to the medical-biological rationale for the project.
The project won a grant issued by the Dutch Collaborating Health Funds aiming for disease-overarching and patient driven research, and was given much praise for its innovative set up. However, as a result of the resistance met with over the course of the project, notably the Medical Ethical Research Review Board (METC), the project had to be aborted one and half year after its start (March 2020). Even though this was a dramatic finish of the project, the experience gained is of great potential value as to re-examine the current medical-ethical framework that governs medical research, specifically in the light of the rise of patent-led research. This ePoster is the first of a series of papers to unpack the lessons learned.
Author/s: Carlos Cañas, Maria Attard and Muki HaklayPresenter: Carlos Cañas
The importance of pedestrian experience is being increasingly recognised as a crucial determinant to assess the walkability of a place. An innovative methodological approach inspired by citizen science principles allows participants to contribute to walkability research, in order to better understand the underlying relationships between the public space and pedestrian mobility and behaviour.This research develops a perceived walkability assessment based on street safety, comfort, pleasantness and vibrancy. It also identifies the most relevant environmental elements that influence such experiences, both in a positive and negative way. The use of social media and messaging platforms presents some innovative and cost-effective data collection and analysis methods.
Author/s: Gaston Remmers, Lea Den Broeder, Sabine Wildevuur and Martijn De GrootPresenter: Gaston Remmers
This presentation will summarize the findings of an online virtual workshop that will take place at the ECSA conference on Tuesday 8 September 2020, 10-11:30 h.
If you want to join that workshop, please contact Gaston Remmers at email@example.com
Goal of the workshop is to develop the base for a joint green paper on the core dimensions and challenges for the development of Citizen Science in Health. The green paper will be shared within ECSA. It will also serve as a starting point for creating an international network on Enhancing Health through Citizen Science.