People with dementia are confronted with many decisions. However, they are often not involved in the process of the decision-making. Shared Decision-Making (SDM) enables involvement of persons with dementia in the decision-making process. In our study, we develop a supportive IT application aiming to facilitate the decision-making process in care networks of people with dementia. A key feature in the development of this SDM tool is the participation of all network members during the design and development process, including the person with dementia. In this paper, we give insight into the first phases of this design and development process in which we conducted extensive user studies and translated wishes and needs of network members into user requirements
Patients with a hematologic malignancy increasingly prefer to be actively involved in treatment decision-making. Shared decision-making (SDM), a process that supports decision-making in preference-sensitive decisions, fits well with this need. A decision is preference sensitive when well-informed patients considerably differ in their trade-offs between the pros and cons of one option, or if more equal treatment options are available, including no treatment. SDM involves several steps: the first is choice talk, where the professional informs the patient that a decision needs to be made between the various relevant options and that the patient's opinion is important. The second is option talk, where the professional explains the options and their pros and cons. In the third step, preference talk, the professional and the patient discuss the patient's preferences. The professional supports the patient in deliberation. The final step is decision talk, where the professional and patient discuss the patient's decisional role preference, make or defer the decision and discuss possible follow-up.
Introduction: Shared decision-making is considered to be a key aspect of woman-centered care and a strategy to improve communication, respect, and satisfaction. This scoping review identified studies that used a shared decision-making support strategy as the primary intervention in the context of perinatal care. Methods: A literature search of PubMed, CINAHL, Cochrane Library, PsycINFO, and SCOPUS databases was completed for English-language studies conducted from January 2000 through November 2019 that examined the impact of a shared decision-making support strategy on a perinatal decision (such as choice of mode of birth after prior cesarean birth). Studies that only examined the use of a decision aid were excluded. Nine studies met inclusion criteria and were examined for the nature of the shared decision-making intervention as well as outcome measures such as decisional evaluation, including decisional conflict, decisional regret, and certainty. Results: The 9 included studies were heterogeneous with regard to shared decision-making interventions and measured outcomes and were performed in different countries and in a variety of perinatal situations, such as women facing the choice of mode of birth after prior cesarean birth. The impact of a shared decision-making intervention on women’s perception of shared decision-making and on their experiences of the decision-making process were mixed. There may be a decrease in decisional conflict and regret related to feeling informed, but no change in decisional certainty. Discussion: Despite the call to increase the use of shared decision-making in perinatal care, there are few studies that have examined the effects of a shared decision-making support strategy. Further studies that include antepartum and intrapartum settings, which include common perinatal decisions such as induction of labor, are needed. In addition, clear guidance and strategies for successfully integrating shared decision-making and practice recommendations would help women and health care providers navigate these complex decisions.
The impacts of tourism on destinations and the perceptions of local communities have been a major concern both for the industry and research in the past decades. However, tourism planning has been mainly focused on traditions that promote the increase of tourism without taking under consideration the wellbeing of both residents and visitors. To develop a more sustainable tourism model, the inclusion of local residents in tourism decision-making is vital. However, this is not always possible due to structural, economic and socio-cultural restrictions that residents face resulting to their disempowerment. This study aims to explore and interpret the formal processes around tourism decision-making and community empowerment in urban settings. The research proposes a comparative study of three urban destinations in Europe (The Hague in the Netherlands, San Sebastian in Spain and, Ioannina in Greece) that experience similar degree of tourism growth. The proposed study will use a design-based approach in order to understand tourism decision-making and what empowers or disempowers community participation within the destinations. Based on the findings of primary and secondary data, a community empowerment model will be applied in one the destinations as a pilot for resident engagement in tourism planning. The evaluation of the pilot will allow for an optimized model to be created with implications for tourism planning at a local level that can contribute to sustainable destinations that safeguard the interests of local residents and tourists.
The ELSA AI lab Northern Netherlands (ELSA-NN) is committed to the promotion of healthy living, working and ageing. By investigating cultural, ethical, legal, socio-political, and psychological aspects of the use of AI in different decision-makingcontexts and integrating this knowledge into an online ELSA tool, ELSA-NN aims to contribute to knowledge about trustworthy human-centric AI and development and implementation of health technology innovations, including AI, in theNorthern region.The research in ELSA-NN will focus on developing and mapping ELSA knowledge around three general concepts of importance for the development, monitoring and implementation of trustworthy and human-centric AI: availability, use,and performance. These concepts will be explored in two lines of research: 1) use case research investigating the use of different AI applications with different types of data in different decision-making contexts at different time periods duringthe life course, and 2) an exploration among stakeholders in the Northern region of needs, knowledge, (digital) health literacy, attitudes and values concerning the use of AI in decision-making for healthy living, working and ageing. Specificfocus will be on investigating low social economic status (SES) perspectives, since health disparities between high and low SES groups are growing world-wide, including in the Northern region and existing health inequalities may increase with theintroduction and use of innovative health technologies such as AI.ELSA-NN will be integrated within the AI hub Northern-Netherlands, the Health Technology Research & Innovation Cluster (HTRIC) and the Data Science Center in Health (DASH). They offer a solid base and infrastructure for the ELSA-NNconsortium, which will be extended with additional partners, especially patient/citizens, private, governmental and researchrepresentatives, to have a quadruple-helix consortium. ELSA-NN will be set-up as a learning health system in which much attention will be paid to dialogue, communication and education.
The purpose of this project was to create a roadmap with selected mechanisms to assist destination management organisations to optimize the benefits generated by tourism for their destination communities and ensure that it is shared equitably. By providing tools to identify and address inequality in terms of access to the benefits and value tourism generates, it is envisaged that a more equitable tourism model can be implemented leading to the fair distribution of benefits in destination communities, potentially increasing the value for previously excluded or underserved groups. To produce the roadmap, the study team will explore the range of challenges that hinder the equitable distribution of tourism-induced benefits in destinations as well as the enabling factors that influence the extent to which this is achieved. The central question the research team has set out to answer is the following: What does an equitable tourism model look like for destination communities?Societal issueHowever, while those directly involved in tourism will gain the most, the burden of hosting visitors is widely felt by local communities. This imbalance has, unsurprisingly, sparked civil mobilisations and protests in destinations around the world. It’s clear that placemaking and benefit-sharing must be part of the future of destination management to maintain public support. This project addressed issues around equity (environmental, economic, spatial, cultural and tourism experience). In line with the intentions set out in the CELTH Agenda Conscious Destinations.Benefit to societyBased on 25 case studies around 40 mechanisms were identified that can grow or better distribute the value from tourism, so that more people in destination communities benefit. These mechanisms are real-world practices already in use. DMOs and NTOs can consider introducing the mechanisms that best fit their destination context, pulling levers such as: taxes and revenue sharing, business incubation and training, licencing and zoning, community enterprises and volunteering, and product development..This report also outlines a pathway to an Equity-Driven Management (EDM) approach, which is grounded in participatory decision-making principles and aims to create a more equitable tourism system by strengthening the hand of destination governance and retaining control of local resources.Collaborative partnersNBTC, the Travel Foundation, Destination Think, CELTH, ETFI, HZ.