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Nowadays, health care is confronted with a wide variety of problems: new emerging or re-emerging diseases, rising costs, increasingly complex management processes, and so on. Since the 1990s most nations have tried to deal with problems by reforming their health systems. However, many of these reforms did not succeed in realizing the desired gains in efficiency and equity. This book aims at exploring persistent problems in health systems and health system reform from an innovative perspective - the perspective of the new, emerging scientific field of system innovation and transition theory. This generates new and refreshing insights on how to innovate and strengthen health systems. In particular, strategies that could be labeled transition experiments - involving all relevant stakeholders exploring new constellations in niches - are described and analyzed

BACKGROUND: Self‐tests enable the identification of (risk factors for) diseases and are carried out on the user's initiative without medical indication or advice and often unaided by a health professional. They are frequently used, and their availability and usage are expected to grow. Self‐testing has both advantages and disadvantages. Making a well‐informed decision about whether to self‐test and which self‐test to use is of major importance. OBJECTIVE: To provide insights into the experiences of self‐test users, identifying reasons to self‐test and perceived (dis)advantages of using self‐tests and the information highlighted as relevant by self‐test users to make well‐informed decisions. METHODS: In a qualitative study, 28 users of a wide variety of self‐tests shared their experiences in focus groups and interviews. RESULTS: Perceived disadvantages of self‐testing included the following: a wide range of available self‐tests, lack of insights into their reliability and content, possibility of mistakes in administering them, possibility of false‐positive and false‐negative results, lack of clarity about how to interpret results and consequently what action to take and fear of not being taken seriously by a general practitioner. Self‐test aspects that were viewed as most important include informed decision making, user‐friendliness, usefulness and reliability of results. CONCLUSION: A decision aid for future self‐test users can help people make a deliberate decision on whether to use a self‐test and which particular self‐test to use from the wide range available. The government, health professionals, patient organizations, consumer organizations and citizens all have a role to play in the development and implementation of a decision aid.

AbstractWhile the right of children to be involved in decisions that concern them has been widely recognised, they are currently barely involved in guideline development in healthcare. This paper aims to explore what a future guideline development system in which children are meaningfully involved might look like and to reflect on the transition required to achieve this. We used a systems innovation perspective, exploring child participation within its systemic context and complexity. To this end, we conducted 24 interviews with various actors, about their ideas on and experiences with child participation in guideline development in the Dutch system (between August 2018 and September 2020), complemented with a scoping review. The current system is characterised by a high‐speed, rigid process that relies heavily on scientific evidence. Children are usually not included or taken seriously. The contours of a system in which children are meaningfully involved would differ markedly: children would be considered capable and taken seriously, and the guideline development process would be flexible, with time for interaction with children and discussion about the implications of their perspectives. We encountered few examples of child participation in guideline development worldwide, and believe our results are indicative of the situation in other Western countries. We propose the following actions: (1) Development of a discussion arena to create a joint vision on the aim of guideline development and subsequently the role of child participation therein. (2) Set up of transition experiments unbound by the current constellation, conducted by front‐runners who are open to children's perspectives. These are essential to clarify pathways towards a future in which the voices of children are meaningfully integrated. It remains to be seen, however, whether there are sufficient actors who feel the necessary urgency for change.

The popularity of Participatory Action Research (PAR) increases the risk of tokenism and blurring the boundaries of what might be considered 'good' PAR. This became a pressing issue when we were invited by the City of Amsterdam to conduct PAR on digital inequality with vulnerable citizens in Amsterdam, within serious constraints of time and budget. We decided to take up the challenge to offer citizens an opportunity to share their needs. This paper aims to increase the transparency of the complex reality of a PAR process in order to help new researchers learn about the challenges of PAR in real-life situations, and to open up the discussion on the quality and boundaries of PAR. Though we managed to implement some core ethical principles of PAR in this project, two were particularly under pressure: democratic participation and collective action. These jeopardized collective learning and might unintentionally feed stereotypes regarding people's capabilities. Nevertheless, this small and local study did manage to create ripples for change.

Apart from the scientific unknowns and technological barriers that complicate the development of medical neuroimaging applications, various relevant actors might have different ideas on what is considered advancement or progress in this field. We address the challenge of identifying societal actors and their different points of view concerning neuroimaging technologies in an early phase of neuroimaging development. To this end, we conducted 16 semistructured interviews with societal actors, including governmental policy makers, health professionals, and patient representatives, in the Netherlands. We show how the contextual aspects of applications and underlying features of the ideal health system determine the desirability. Neuroimaging developments are perceived as innovations that will optimize the current health system or as opportunities to change existing structures and practices of the current health system more radically. Insights into and understanding of these visions show incongruence between visions regarding desirable medical neuroimaging use and potential conflicting visions regarding the embedding of neuroimaging applications. We conclude that it is possible to prospectively identify incongruent visions and analyze when these visions will most likely come into conflict with each other. Such an analysis might provide a reflective space, beyond personal and political interest, suitable as a starting point for joint reflection and mutual learning in order to manage medical neuroimaging innovations towards more responsible applications.

Apart from the scientific unknowns and technological barriers that complicate the development of medical neuroimaging applications, various relevant actors might have different ideas on what is considered advancement or progress in this field. We address the challenge of identifying societal actors and their different points of view concerning neuroimaging technologies in an early phase of neuroimaging development. To this end, we conducted 16 semistructured interviews with societal actors, including governmental policy makers, health professionals, and patient representatives, in the Netherlands. We show how the contextual aspects of applications and underlying features of the ideal health system determine the desirability. Neuroimaging developments are perceived as innovations that will optimize the current health system or as opportunities to change existing structures and practices of the current health system more radically. Insights into and understanding of these visions show incongruence between visions regarding desirable medical neuroimaging use and potential conflicting visions regarding the embedding of neuroimaging applications. We conclude that it is possible to prospectively identify incongruent visions and analyze when these visions will most likely come into conflict with each other. Such an analysis might provide a reflective space, beyond personal and political interest, suitable as a starting point for joint reflection and mutual learning in order to manage medical neuroimaging innovations towards more responsible applications.

Introduction Despite the relatively high prevalence and challenges of visual impairments, limited funding is available for ophthalmologic research in the Netherlands. The research needs of people with visual impairments could aid the ophthalmological research community to optimally distribute research resources. The objective of the study presented here was to identify daily life problems, concerns, and wishes for future research from people with ophthalmological disorders, visual impairments, or deafblindness in order to set a research agenda that provides directions for future ophthalmology research. Methods A four-phase participatory research approach was carried out using mixed methods to stimulate needs-articulation. Eight focus group discussions, seven feedback meetings, and seven interviews were organized, in which 89 consumers were consulted. Surveys to prioritize the topics were developed for both the medical and sociopsychological topics, which were completed by 784 and 631 respondents, respectively. Results For the medical research agenda, research directly aimed at the cause of the ophthalmological disorders was considered more important than research aimed at improving quality of life. The themes "new and regenerative medicine," "cause and disease mechanism," "prevention and diagnosis," and "improvement of current treatments" were prioritized as high. For the sociopsychological agenda, needs concerning the "improvement of technologies for people with visual impairments" and "navigation, orientation, and accessibility of public space" were considered top priorities. Discussion The identified research needs were relatively uniform across different consumer groups, providing opportunities for joint action. The research agenda included themes that can be taken up by "traditional" ophthalmological research, more broadly defined health care–related research, and more policy-influencing strategies. Implications for practitioners The research needs could help researchers and policymakers in ophthalmology and visual impairment research to guide their research focus and legislation priorities.

Participation of end users in decision-making on science is increasingly practiced, as witnessed by the growing body of scientific literature on case evaluations. In the biomedical field, however, end-user participation in decision-making is rare. Some scholars argue that because patients are stakeholders and relevant experts, they could also provide important contributions to decision-making within the field of biomedical research. But what strategies could be used to effectively implement patient participation in decision-making on biomedical research? In this article, we analyze strategies for patient participation and conclude that these can hardly be regarded effective because they do not ensure patients' structural influence on decision-making. We identify obstacles for effective patient participation, which seem to reflect a resilience of the current biomedical decision-making network. We subsequently elaborate on the concept of transition management in the search for clues on how to breach this resilience and change the network toward the inclusion of patients.

Historically, the Netherlands has hosted a large number of migrant sex workers. Since sex work is considered a legal profession it might serve as an example of better access to health services, including HIV testing, at least for those working within the legal framework. However, migrant sex workers, especially non-European Union (EU) nationals, might not be eligible to register for official employment and thus face obstacles in obtaining access to health services, becoming essentially invisible. This study examined context-specific vulnerabilities of migrant female sex workers (FSWs) from Belarus, Moldova, Russia and Ukraine, whether and how they have access to HIV testing compared to other EE, non-EU migrant FSWs in Amsterdam in the Netherlands. We conducted a multi-stakeholder perspective study from November 2015 to September 2017 in Amsterdam. The study comprised 1) semi-structured interviews with key stakeholders (N = 19); 2) in-depth interviews with Eastern European, non-EU migrant FSWs (N = 5) and field observations of the escort agency working with them; and 3) in-depth interviews with key stakeholders (N = 12). We found six key barriers to HIV testing: 1) migration and sex-work policies; 2) stigma, including self-stigmatization; 3) lack of trust in healthcare providers or social workers; 4) low levels of Dutch or English languages; 5) negative experience in accessing healthcare services in the home country; and 6) low perceived risk and HIV-related knowledge. Having a family and children, social support and working at the licensed sex-work venues might facilitate HIV testing. However, Internet-based sex workers remain invisible in the sex-work industry. Our findings indicate the importance of addressing women's diverse experiences, shaped by intrapersonal, interpersonal, community, network and policy-level factors, with stigma being at the core. We call for the scaling up of outreach interventions focusing on FSWs and, in particular, migrant FSWs working online

Transdisciplinary research and innovation (R&I) efforts have emerged as a means to address challenges to sustainable transformation. One of the main elements of transdisciplinary efforts is the 'inclusion' of different stakeholders, values and perspectives in participatory R&I processes. In practice, however, 'doing inclusion' raises a number of challenges. In this article, we aim to contribute to re-politicizing inclusion in transdisciplinarity for transformation, by (1) empirically unraveling four key challenges that emerge in the political practice of 'doing inclusion', (2) illustrating how facilitators of inclusion processes perform balancing acts when confronted with these challenges, and (3) reflecting on what the unfolding dynamics suggests about the politics of stakeholder inclusion for societal transformation. In doing so, we analyze the transdisciplinary FIT4FOOD2030 project (2017–2020)—an EU-funded project that aimed to contribute to fostering EU R&I systems' ability to catalyze food system transformation through stakeholder engagement in 25 Living Labs. Based on 3 years of action-research (including interviews, workshops and field observations), we identified four inherent political challenges to 'doing inclusion' in FIT4FOOD2030: (1) the challenge to meaningfully bring together powerful and marginalized stakeholders; (2) combining representation and deliberation of different stakeholder groups; (3) balancing diversities of inclusion with directionalities implied by transformative efforts; and (4) navigating the complexities of establishing boundaries of inclusion processes. We argue that by understanding 'doing inclusion' as a political practice, necessitating specificity about the (normative) ambitions in different inclusion settings, facilitators may better grasp and address challenges in transdisciplinarity for transformation.