Background and objective Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the current practice of public involvement in palliative care. Setting and sample The study was conducted in the province of Limburg in the Netherlands, with six palliative care networks. Study participants were 16 patient representatives and 12 professionals. Method This study had a descriptive design using qualitative methods: 18 in-depth interviews and three focus groups were conducted. The critical incident technique was used. The data were analysed using an analytical framework based on Arnstein’s involvement classification and the process of decision making. Impact categories as well as facilitators and barriers were analysed using content analysis. Findings and conclusion The perceived impact of public involvement in palliative care in terms of citizen control and partnership is greatest with regard to quality of care, information development and dissemination, and in terms of policymaking with regard to the preparation and implementation phases of decision making. The main difference in perceived impact between patient representatives and professionals relates to the tension between operational and strategic involvement. Patient representatives experienced more impact regarding short-term solutions to practical problems, while professionals perceived great benefits in long-term, strategic processes. Improving public involvement in palliative care requires positive attitudes, open communication, sufficient resources and long-term support, to build a solid basis for pursuing meaningful involvement in the entire decision-making process.
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Background: Acquiring the theoretical and practical knowhow of conducting patient and public involvement (PPI) in research is not part of the traditional curriculum of researchers. Zuyd University of Applied Sciences and Huis voor de Zorg, a regional umbrella patient organization, therefore started a 1.5-year coaching programme. Objective: To establish a community of practice by developing a PPI coaching programme for senior and junior health services researchers of Zuyd University. The context consisted of research projects conducted by the participants. Methods: A participatory action research methodology. Data were collected from reports of thematic group meetings and individual sessions with participants, field notes and regular reflection meetings with the project team. Data were analysed by reflexive deliberation. Findings: The programme comprised a kick-off meeting (52 attendees), followed by 7 group meetings with 11 junior and 9 senior researchers. The project team constructed a serious game based on the concept of the participation ladder. Questions and concerns differed for junior and senior researchers, and separate tailored meetings were organized for both groups. Between group meetings, participants received individual assignments. Group meetings were accompanied by individual coaching sessions to provide tailor-made feedback. The programme concluded with a combined meeting with all stakeholders. Conclusion: Building a community of PPI practice through action research facilitates the development of a coaching programme that fosters social learning, empowerment and the development of a shared identity concerning PPI. The role and responsibilities of senior researchers should be distinguished from those of junior researchers.
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Responsive public spaces use interactive technologies to adapt to users and situations. This enhances the quality of the space as a public realm. However, the application of responsive technologies in spatial design is still to be explored. What exactly are the options for incorporating responsive technologies in spatial designs to improve the quality of public spaces? The book Responsive Public Spaces explores and disentangles this new assignment for designers, and presents inspiring examples. A consortium of spatial designers, interaction designers and local stakeholders, headed by the Chair of Spatial Urban Transformation of Amsterdam University of Applied Sciences, carried out a two-year practice-based study of responsive public spaces. This book draws on those insights to provide a practical approach and a roadmap for the new design process for responsive public spaces.The study results are of signi¬icance for various professional fields. The book is intended for clients and stakeholders involved in planning and design of public spaces, spatial designers, interaction designers and students.
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The HAS professorship Future Food Systems is performing applied research with students and external partners to transform our food system towards a more sustainable state. In this research it is not only a question of what is needed to achieve this, but also how and with whom. The governance of our food system needs rethinking to get the transformative momentum going in a democratic and constructive manner. Building on the professorship’s research agenda and involvement in the transdisciplinary NWA research project, the postdoc will explore collective ownership and inclusive participation as two key governance concepts for food system transformation. This will be done in a participatory manner, by learning from and with innovative bottom-up initiatives and practitioners from the field. By doing so, the postdoc will gain valuable practical insights that can aid to new approaches and (policy) interventions which foster a sustainable and just food system in the Netherlands and beyond. A strong connection between research and education is created via the active research involvement of students from different study programs, supervised by the postdoc (Dr. B. van Helvoirt). The acquired knowledge is embedded in education by the postdoc by incorporating it into HAS study program curricula and courses. In addition, it will contribute to the further professional development of qualitative research skills among HAS students and staff. Through scientific, policy and popular publications, participation in (inter)national conferences and meetings with experts and practitioners, the exposure and network of the postdoc and HAS in the field of food systems and governance will be expanded. This will allow for the setting up of a continuous research effort on this topic within the professorship via follow-up research with knowledge institutes, civic society groups and partners from the professional field.
This project establishes a collaborative network centered around the Amsterdam Museum, comprising key stakeholders from prominent cultural institutions, including the Centraal Museum Utrecht and the Rotterdam Museum. The consortium is designed to explore the transformative potential of co-creation in museums, focusing on enhancing visitor engagement, fostering inclusivity, and integrating digital technologies into cultural practices. Key personnel will provide interdisciplinary expertise in communication and cultural heritage, facilitating a robust understanding of stakeholder dynamics and collaborative processes. The research aims to analyze how co-creation can bridge the gap between museums and their diverse audiences, creating a sense of ownership and connection. Initial observational findings suggest that co-creation practices significantly enhance visitor experiences while revealing stakeholders' desires for deeper collaborative opportunities. To achieve these objectives, qualitative methods such as semi-structured interviews, focus groups, and ethnographic observations will be employed, delivering rich insights into the impact of co-created programming. An essential output of this project will be an academic publication aimed at foundational research on effective co-creation practices within the cultural sector. Furthermore, the consortium will pursue a larger grant application to secure sustainable funding for ongoing research initiatives, ensuring the long-term viability and impact of this collaborative network. This will not only advance academic discourse but also facilitate knowledge transfer between academia and museums, enriching cultural engagement strategies. Ultimately, the project aspires to enhance the visibility and societal relevance of cultural institutions, fostering innovative solutions to contemporary challenges through collaborative research and community involvement.
The projectThe overarching goal of DIGNITY, DIGital traNsport In and for socieTY, is to foster a sustainable, integrated and user-friendly digital travel eco-system that improves accessibility and social inclusion, along with the travel experience and daily life of all citizens. The project delves into the digital transport eco-system to grasp the full range of factors that might lead to disparities in the uptake of digitalised mobility solutions by different user groups in Europe. Analysing the digital transition from both a user and provider’s perspective, DIGNITY looks at the challenges brought about by digitalisation, to then design, test and validate the DIGNITY approach, a novel concept that seeks to become the ‘ABCs for a digital inclusive travel system’. The approach combines proven inclusive design methodologies with the principles of foresight analysis to examine how a structured involvement of all actors – local institutions, market players, interest groups and end users – can help bridge the digital gap by co-creating more inclusive mobility solutions and by formulating user-centred policy frameworks.The objectivesThe idea is to support public and private mobility providers in conceiving mainstream digital products or services that are accessible to and usable by as many people as possible, regardless of their income, social situation or age; and to help policy makers formulate long-term strategies that promote innovation in transport while responding to global social, demographic and economic changes, including the challenges of poverty and migration.The missionBy focusing on and involving end-users throughout the process of designing policies, products, or services, it is possible to reduce social exclusion while boosting new business models and social innovation. The end result that DIGNITY is aiming for is an innovative decision support tool that can help local and regional decision-makers formulate digitally inclusive policies and strategies, and digital providers design more inclusive products and services.The approachThe DIGNITY approach combines analysis with concrete actions to make digital mobility services inclusive over the long term. The approach connects users’ needs and requirements with the provision of mobility services, and at the same time connects those services to the institutional framework. It is a multi-phase process that first seeks to understand and bridge the digital gap, and then to test, evaluate and fine-tune the approach, so that it can be applied in other contexts even after the project’s end.Partners: ISINNOVA (Italy), Mobiel 21 (Belgium), Universitat Politechnica deCatalunya Spain), IZT (Germany), University of Cambridge (UK), Factualconsulting (Spain), Barcelona Regional Agencia (Spain), City of Tilburg(Netherlands), Nextbike (Germany), City of Ancona (Italy), MyCicero (Italy),Conerobus (Italy), Vlaams Gewest (Belgium)
