Even though citizen and patient engagement in health research has a long tradition, citizen science in health has only recently gained attention and recognition. However, at present, there is no clear overview of the specifics and challenges of citizen science initiatives in the health domain. Such an overview could contribute to highlighting and articulating the different needs of stakeholders engaged in any form of citizen science in the health domain. It may also encourage the input of citizens and patients alike in health research and innovation, policy, and practice. This paper reports on a survey developed by the European Citizen Science Association (ECSA)’s Working Group “Citizen Science for Health,” to highlight the perceived characteristics and enabling factors of citizen science in the health domain, and to formulate a direction for future work and research. The survey was available in six languages and was open between January and August 2022. The majority of the 254 respondents were from European countries, and the largest stakeholder respondent group was researchers. Respondents were asked about their perspectives on the particular characteristics of citizen science performed in health and biomedical research, as well as the challenges and opportunities it affords. Ethics, the complexity of the health domain, and the overlap in roles whereby the researcher is sometimes also the subject of research, were the main issues suggested as being specific to citizen science in health. The top two areas that respondents identified as in need of development were “balanced return on investment” and “ethics.” This publication discusses these and other conditions with references to current literature.
BackgroundIn 2015, Amsterdam became part of the WHO Age Friendly City community, thereby accepting the responsibility to work towards a more age friendly Amsterdam. To study senior citizens’ needs and wishes concerning the age friendliness of their neighbourhood, the municipality asked the Amsterdam University of Applied Science to set up two pilot projects in two neighbourhoods. Aim was to 1) gain insight in seniors’ views and wishes regarding an age friendly city, and 2) reflect on the experiences with working with senior co-researchers. MethodologyThe study followed a Participatory Action Research approach with research teams consisting of seniors as co-researchers and professional researchers. We chose two neighbourhoods with distinct characteristics: the Indische Buurt which is centrally located, vibrant, multicultural, and strongly gentrifying, and Buitenveldert, a suburban and spacious neighbourhood, with less facilities and a dominance of well-to-do senior citizens. In both areas, we recruited senior co-researchers to form the research teams. They generally lived in, or close to, the pilot neighbourhood, and varied in age and ethnical background. The aim was to put the co-researchers in the lead during the entire research process. However, it differed between the neighbourhoods which type of researcher was in the lead. As a team, they formulated the main research question, constructed a topic list for interviews with older citizens, convened the interviews, analysed the data, wrote the report, and presented the results. During the entire process, they were supported by professional researchers.Both research teams interviewed 40 senior citizens, who were recruited through the co-researchers’ networks, professional care organisations, neighbourhood communities, and local media. We intended to gather a sample representative for the neighbourhood population. In the Indische Buurt, this proved to be difficult, since the relatively large Turkish and Moroccan communities were difficult to get into contact with, and it was hard to find co-researchers from those communities who could have provided a way in. Process and outcomesWe will share some of the results, but we will mainly reflect on the research process. ProcessRegarding the process, we found some differences between the two neighbourhoods. In the Indische Buurt, it took much effort to find co-researchers, since the seniors we encountered said to be too busy with other neighbourhood activities. We did recruit a small group of four co-researchers of different ethnical background, but sadly lacking Turkish and Moroccan seniors. They started with a very limited research experience and experienced ownership, which greatly increased during the process. At the finalisation of the project, the group ceased to be, but the outcomes were followed up by existing groups and organisations in the neighbourhood.In Buitenveldert, a large group of co-researchers was recruited in no-time, bearing more resemblance to an action group than a research group. They were generally highly educated and some already had research experience. The group proved to be pro-active, had a strong feeling of ownership, and worked in constant collaboration with the ‘professional’ researchers, respecting each other’s knowledge and skills. At the finalisation of the project, the group remained active as partner of the local government. OutcomesConcerning the content of the outcomes, we found some expected differences and unexpected similarities. For instance, we expected to find different outcomes concerning housing and facilities between the neighbourhoods. Indeed, in Buitenveldert, housing was already age friendly whereas facilities were scarce and geographically far apart. Yet, in the Indische Buurt, housing was poorly equipped for physically impaired seniors, but facilities were abundant and close by.We also found that, in both neighbourhoods, senior citizens were reluctant to share their limitations and ask for support, despite differences in neighbourhood, ethnicity, age etc. Of course, this can be expected of seniors from the ‘silent generation’. However, they seemingly shared these emotions more easily with their peers than with professional researchers. ConclusionThe social-cultural context of the neighbourhood impacts the research process. Overall, co-research appears to be a fruitful method to involve senior citizens in decisions concerning the improvement of their neighbourhood. Aims and content of the workshopWe aim to:• present our reflections on the participative process of working with senior co-researchers in Amsterdam• exchange and discuss with the participants of the workshop the lessons learned on how to facilitate citizens’ participation in the community• discuss similar and future projects and possibilities for collaboration among the participants of the workshopContent of the workshop• Presentation• Exchange and discussion in small groups • Plenary discussion on possible collaboration projects aiming to enhance citizens’ participation in the community
Dutch society faces major future challenges putting populations’ health and wellbeing at risk. An ageing population, increase of chronic diseases, multimorbidity and loneliness lead to more complex healthcare demands and needs and costs are increasing rapidly. Urban areas like Amsterdam have to meet specific challenges of a growing and super divers population often with a migration background. The bachelor programs and the relating research groups of social work and occupational therapy at the Amsterdam University of Applied Sciences innovate their curricula and practice-oriented research by multidisciplinary and cross-domain approaches. Their Centres of Expertise foster interprofessional research and educational innovation on the topics of healthy ageing, participation, daily occupations, positive health, proximity, community connectedness and urban innovation in a social context. By focusing on senior citizens’ lives and by organizing care in peoples own living environment. Together with their networks, this project aims to develop an innovative health promotion program and contribute to the government missions to promote a healthy and inclusive society. Collaboration with stakeholders in practice based on their urgent needs has priority in the context of increasing responsibilities of local governments and communities. Moreover, the government has recently defined social base as being the combination of citizen initiatives, volunteer organizations , caregivers support, professional organizations and support of vulnerable groups. Kraktie Foundations is a community based ethno-cultural organization in south east Amsterdam that seeks to research and expand their informal services to connect with and build with professional care organizations. Their aim coincides with this project proposal: promoting health and wellbeing of senior citizens by combining intervention, participatory research and educational perspectives from social work, occupational therapy and hidden voluntary social work. With a boundary crossing innovation of participatory health research, education and Kraktie’s work in the community we co-create, change and innovate towards sustainable interventions with impact.
Nature areas in North-West Europe (NWE) face an increasing number of visitors (intensified by COVID-19) resulting in an increased pressure on nature, negative environmental impacts, higher management costs, and nuisance for local residents and visitors. The high share of car use exaggerates these impacts, including peak pressures. Furthermore, the almost exclusive access by car excludes disadvantaged people, specifically those without access to a car. At the same time, the urbanised character of NWE, its dense public transport network, well-developed tourism & recreation sector, and presence of shared mobility providers offers ample opportunities for more sustainable tourism. Thus, MONA will stimulate sustainable tourism in and around nature areas in NWE which benefits nature, the environment, visitors, and the local economy. MONA will do so by encouraging a modal shift through facilitating sustainableThe pan-European Innovation Action, funded under the Horizon Europe Framework Programme, aims to promote innovative governance processes ,and help public authorities in shaping their climate mitigation and adaptation policies. To achieve this aim, the GREENGAGE project will leverage citizens’ participation and equip them with innovative digital solutions that will transform citizen’s engagement and cities’ effectiveness in delivering the European Green Deal objectives for carbon neutral cities.Focusing on mobility, air quality and healthy living, citizens will be inspired to observe and co-create their cities by sensing their urban environments. The aim to complement, validate, and enrich information in authoritative data held by the public administrations and public agencies. This will be facilitated by engaging with citizens to co-create green initiatives and to develop Citizen Observatories. In GREENGAGE, Citizen Observatories will be a place where pilot cities will co-examine environmental issues integrating novel bottom-up process with top-down perspectives. This will provide the basis to co-create and co-design innovative solutions to monitor environmental problems at ground level with the help of citizens.With two interrelated project dimensions, the project aims to enhance intelligence applied to city decision-making processes and governance by engaging with citizen observations integrated with Copernicus, GEOSS, in-situ, and socio-economic intelligence, and by delivering innovative governance models based on novel toolboxes of decision-making methodologies and technologies. The envisioned citizens observatory campaigns will be deployed and fully demonstrated in 5 pilot engagements in selected European cities and regions including: Bristol (the United Kingdom), Copenhagen (Denmark), Turano / Gerace (Italy) and the region of Noord Brabant (the Netherlands). These innovation pilots aim to highlight the need for smart city governance by promoting citizen engagement, co-creation, gathering new data which will complement existing datasets and evidence-based decision and policymaking.
PUBLIC PLAY SPACE promotes innovative and creative practices for the co-design of inclusive, cohesive and sustainable public spaces, through the use of games and digital technologies, in a transnational and European perspective, fostering the process of placemaking.Participation of citizens in the design of the public space is recognized as fundamental to build inclusive, cohesive and sustainable public space. As local governments grow more and more interested in civic participation, it becomes important to explore available methodologies addressing challenges related with participatory processes. Games have been proposed since the 1960s as a means of facilitating participatory processes by enabling cooperative environments to shape and support citizens’ interaction. The change led by Information and Communication technologies opens the debate on how advanced technologies, from video games to Virtual and Augmented Reality can help to open the process of co-creation to new audiences, enhancing citizen participation, both with respect to the design and space usage. PUBLIC PLAY SPACE aims to explore the process of development and use of innovative video-games for public space co-design through a wide range of actions targeted at education, knowledge production, debate rising and audience development; it will focus on the following actions:- On-line platform development;- State of the art book development;- 3 Creative & Capacity building workshops on advanced video-games co-development;- 3 Open-Game Events / Public space co-creation workshops with citizens (T: Neighbourhood associations, young people, citizens);- A Co-created touring exhibition on Games for placemaking, taking place in 6 cities;- 1 symposium on games for co-design;- Public Play Space experience book.
