Table of contents
- Swiss Multiple Sclerosis Register: Exchange at eye level
- Meteo Alpen
- My Survival Story
- Theological empowerment of voluntary church leaders
- Social participation opportunities for young refugees and refugee children
- (Y)our City - citizens' perspective on environmental aspects of urban development in Zurich
- For a better life quality in Winterthur
Swiss Multiple Sclerosis Register: Exchange at eye level
This study is about the implementation, analysis, and dissemination of the first citizen-designed health questionnaire in Switzerland. This questionnaire entitled “My life with MS” was previously elaborated in workshops with 25 persons with MS (PwMS) and will be released by the Swiss Multiple Sclerosis Registry (SMSR) in July 2019. It collects information on important life events related to MS, their real-life impact, as well as personal lessons learned.
Using the questionnaire data, this implementation proposal aims
- to identify and classify typical MS life courses
- to contrast the view of PwMS on important, MS-associated life events with common clinical life course definitions
- to improve data collection methods and automated tools for text-based data analysis to better accommodate the participants’ wish to tell their story
In all these study aspects PwMS are assuming key roles. They contribute by designing the survey, by defining important keywords for natural language processing, by reviewing the initial results, and by discussing the findings in face-to-face and/or online conferences.
Combined, this innovative project will take citizen involvement to the next level by meeting citizens eye-to-eye throughout the full study cycle. The study will not only generate insights for patient-centred care, but we also intend for it to inspire and facilitate new citizen science projects by other health researchers in different disease areas.
In the mountains, weather forecasting remains a major challenge. Calculations of factors such as air circuation often remain inaccurate as there are relatively few measuring stations and terrains can change considerably in small areas. With our project, we want to involve outdoor sportspeople in the collection of measurement data and thus enabling better forecasts. The dense and well-developed network of hiking trails is an opportunity to refine the coarse-meshed network of measuring stations.
With our project we want to 1) test the performance of current weather models in areas that traditionally have a low density of measured data, and 2) discuss the suitability of user-generated data for the improvement of weather models.
My Survival Story
Sharing experiences in dealing with cancer: How can patients, relatives and stakeholders profit from cancer survivors' stories?
My Survival Story is an online storytelling initiative that documents and shares stories of cancer survivors around the world (Cancer Survival Stories). Through different kinds of media, the platform mysurvivalstory.org illustrates various coping strategies to help cancer patients to better manage their own disease. The platform and its contents are produced by the association My Survival Story based in Zurich. All stories have been assessed by the psychological team of the Swiss Cancer League.
A core objective of the project is to describe the perception of those affected, how listening to Cancer Survival Stories is linked to their own medical history and which contents are perceived as helpful or aggravating in coping with their own situation. Moreover, the project explores which everyday and therapeutic settings are best suited for Cancer Survival Stories according to those affected and stakeholders.
As a result, the project produces knowledge about the stories' impact on those affected as well as the developement of corresponding treatments. This also requires the inclusion of the experiences and views of stakeholders such as relatives, doctors, nurses etc.
Claudia Canella, Institute for Complementary and Integrative Medicine, University Hospital Zurich, email@example.com, +41 44 255 51 25
Martin Inderbitzin, My Survival Story, firstname.lastname@example.org
Theological empowerment of voluntary church leaders
This is a Citizen Science project located in Switzerland and Austria that examines the challenges faced by voluntary church members during their education process. In order to foster collaborative church leaderships, the project explores different ways to promote the voluntary church leaders' theological language skills and capacities and, in a broader context, civic participation of regional churches which contribute significantly to their region's social capital.
Contact: Dr. Sabrina Müller, Zentrum für Kirchenentwicklung UZH, email@example.com
Social participation opportunities for young refugees and refugee children
By ratifying the UN Convention on the Rights of the Child, Switzerland has committed itself to taking into account the best interests of the child as a primary consideration, particularly in government measures. For example, with regard to asylum policy, children's rights, such as the right to special protection, educational opportunities and appropriate accommodation must be respected. Furthermore, social participation in social life should be made possible. This means actively involving children and young people in matters that affect them, so that their opinions are taken into account appropriately.
But how do children and young people, their parents and volunteers in Switzerland perceive the opportunities for social participation of refugee children and young people? What conditions, opportunities and challenges can be formulated from the perspective of the involved actors with regard to social participation?
This participatory research project addresses these questions. Volunteers active in the refugee and asylum sector who deal with questions of social participation opportunities based on concrete expereinces are involved as co-researchers and participate in relevant issues. The aim is to realize a joint, explorative, qualitative preliminary study by researchers and citizens.
(Y)our City - citizens' perspective on environmental aspects of urban development in Zurich
The TdLab at ETH Zurich is launching a research project in collaboration with the city administration, the Zurich University of Applied Sciences and the Paititi-Lab in order to clarify the following questions through dialogue with the population:
1. what are the interests and needs of the neighbourhood residents in regards to environmental issues?
We use a transdisciplinary approach to ensure the active participation of citizens throughout the different phases of the project and in the formulation of recommendations. Qualitative and quantitative methods for data collection and analysis are deployed to answer questions 1 and 2, while for question 3 methods of artistic expression and participatory design are included.
The project starts with the two neighbourhoods Wiedikon (district 3) and Hottingen (district 7) and offers many opportunities for exchange and collaborative design. The focus is on urban development-related aspects of environmental issues, life quality and social diversity.
For a better life quality in Winterthur
The city of Winterthur's inhabitants discuss their experienced life quality in a virtual process. Afterwards, participants include the factors developed in this process for further assessement. In a participatory manner, future scenarios and measures to achieve the target system are then designed and developed. In addition to the open discussion forums, system analyses and eDelphi discussions are used.
Contact: Dr. Willi Fehlmann, Winterthur, firstname.lastname@example.org