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.
MULTIFILE
What options are open for peoplecitizens, politicians, and other nonscientiststo become actively involved in and anticipate new directions in the life sciences? In addressing this question, this article focuses on the start of the Human Genome Project (1985-1990). By contrasting various models of democracy (liberal, republican, deliberative), I examine the democratic potential the models provide for citizens' involvement in setting priorities and funding patterns related to big science projects. To enhance the democratizing of big science projects and give citizens opportunities to reflect, anticipate, and negotiate on newdirections in science and technology at a global level, liberal democracy with its national scope and representative structure does not suffice. Although republican (communicative) and deliberative (associative) democracy models meet the need for greater citizen involvement, the ways to achieve the ideal at a global level still remain to be developed.
Far from being negligible in quantity, decentralized energy production delivers a considerable part of the renewable energy production in the Netherlands. Decentralized production takes place by individual households, companies as well as citizen groups. Grassroots initiatives have sprung up in the Netherlands in the last 5 years, in a recent inventory 313 formally instituted local energy cooperatives were found. Cooperatives’ aims are sustainability, strengthening local economy and promoting a democratic governance structure for energy production.The energy industry in the Netherlands has traditionally been dominated by large energy companies, and the Groningen gas field has resulted in a very high dependency on natural gas for both consumer and business households. The climate for grassroots initiatives has improved since the so-called Energy Covenant in 2013. This covenant pertains to an agreement between government, industry representatives, labor unions and non-governmental organizations to arrive at a substantial reduction of energy use, ambitious increase in the production of renewable energy, and new jobs in the renewable energy sector.The covenant also announced new policies to stimulate community energy activities, such as the Zip-code-rose policy . The governmental interest in new forms of energy transition, is also demonstrated by the ‘Experiments Electricity Law’ facility, which gives local business and community initiatives an opportunity to experiment with a local energy system. This policy is meant as a ‘learning facility’; experiences are expected to lead to adaptations in Dutch electricity law and regulation.