Transforming the Welfare State, One Case at a Time: How Utrecht Makes Customized Social Care Work

Advanced welfare states are under pressure to customize services, promptly enough to prevent a cascade of harms. With these goals, the Netherlands in 2015 decentralized social care services to municipalities, and within municipalities to neighborhood teams in continuing contact with clients. The overall results have been disappointing. But the experience of Utrecht, the Netherlands’ fourth-largest city, has been strikingly different. By using hard-to-resolve cases to signal conflicts in rules, obstructive jurisdictional boundaries, and the shortcomings of private service providers, Utrecht is learning to customize and speed delivery of social care through incremental steps. This article explains how Utrecht’s success addresses apparently intractable limits to the adaptability of the rule-bound welfare state, such as the problem of low-level discretion or street-level bureaucracy and the division of services into silos, in the process bridging, and perhaps effacing, the gap between the Habermasian life world and the system world of formal rules

Transforming the welfare state, one case at a time : how Utrecht makes customized social care work

Published online: 17 January 2023Advanced welfare states are under pressure to customize services, promptly enough to prevent a cascade of harms. With these goals, the Netherlands in 2015 decentralized social care services to municipalities, and within municipalities to neighborhood teams in continuing contact with clients. The overall results have been disappointing. But the experience of Utrecht, the Netherlands’ fourth-largest city, has been strikingly different. By using hard-to-resolve cases to signal conflicts in rules, obstructive jurisdictional boundaries, and the shortcomings of private service providers, Utrecht is learning to customize and speed delivery of social care through incremental steps. This article explains how Utrecht's success addresses apparently intractable limits to the adaptability of the rule-bound welfare state, such as the problem of low-level discretion or street-level bureaucracy and the division of services into silos, in the process bridging, and perhaps effacing, the gap between the Habermasian life world and the system world of formal rules

Fair processes for priority setting: Putting theory into practice: Comment on “expanded HTA: Enhancing fairness and legitimacy”

Embedding health technology assessment (HTA) in a fair process has great potential to capture societal values relevant to public reimbursement decisions on health technologies. However, the development of such processes for priority setting has largely been theoretical. In this paper, we provide further practical lead ways on how these processes can be implemented. We first present the misconception about the relation between facts and values that is since long misleading the conduct of HTA and underlies the current assessment-appraisal split. We then argue that HTA should instead be explicitly organized as an ongoing evidence-informed deliberative process, that facilitates learning among stakeholders. This has important consequences for whose values to consider, how to deal with vested interests, how to consider all values in the decision-making process, and how to communicate decisions. This is in stark contrast to how HTA processes are implemented now. It is time to set the stage for HTA as learning

Fair Processes for Priority Setting: Putting Theory into Practice Comment on “Expanded HTA: Enhancing Fairness and Legitimacy”

Embedding health technology assessment (HTA) in a fair process has great potential to capture societal values relevant to public reimbursement decisions on health technologies. However, the development of such processes for priority setting has largely been theoretical. In this paper, we provide further practical lead ways on how these processes can be implemented. We first present the misconception about the relation between facts and values that is since long misleading the conduct of HTA and underlies the current assessmentappraisal split. We then argue that HTA should instead be explicitly organized as an ongoing evidenceinformed deliberative process, that facilitates learning among stakeholders. This has important consequences for whose values to consider, how to deal with vested interests, how to consider all values in the decisionmaking process, and how to communicate decisions. This is in stark contrast to how HTA processes are implemented now. It is time to set the stage for HTA as learnin

Comparative institutional analysis for public health: governing voluntary collaborative agreements for public health in England and the Netherlands.

Democratic institutions and state-society relations shape governance arrangements and expectations between public and private stakeholders about public health impact. We illustrate this with a comparison between the English Public Health Responsibility Deal (RD) and the Dutch 'All About Health…' (AaH) programme. As manifestations of a Whole-of-Society approach, in which governments, civil society and business take responsibility for the co-production of economic utility and good health, these programmes are two recent collaborative platforms based on voluntary agreements to improve public health. Using a 'most similar cases' design, we conducted a comparative secondary analysis of data from the evaluations of the two programmes. The underlying rationale of both programmes was that voluntary agreements would be better suited than regulation to encourage business and civil society to take more responsibility for improving health. Differences between the two included: expectations of an enforcing versus facilitative role for government; hierarchical versus horizontal coordination; big business versus civil society participants; top-down versus bottom-up formulation of voluntary pledges and progress monitoring for accountability versus for learning and adaptation. Despite the attempt in both programmes to base voluntary commitments on trust, the English 'shadow of hierarchy' and adversarial state-society relationships conditioned non-governmental parties to see the pledges as controlling, quasi-contractual agreements that were only partially lived up to. The Dutch consensual political tradition enabled a civil society-based understanding and gradual acceptance of the pledges as the internalization by partner organizations of public health values within their operations. We conclude that there are institutional limitations to the implementation of generic trust-building and learning-based models of change 'Whole-of-Society' approaches

Lack of evidence for a causal role of CALR3 in monogenic cardiomyopathy

The pathogenicity of previously published disease-associated genes and variants is sometimes questionable. Large-scale, population-based sequencing studies have uncovered numerous false assignments of pathogenicity. Misinterpretation of sequence variants may have serious implications for the patients and families involved, as genetic test results are increasingly being used in medical decision making. In this study, we assessed the role of the calreticulin-3 gene (CALR3) in cardiomyopathy. CALR3 has been included in several cardiomyopathy gene panels worldwide. Its inclusion is based on a single publication describing two missense variants in patients with hypertrophic cardiomyopathy. In our national cardiomyopathy cohort (n = 6154), we identified 17 unique, rare heterozygous CALR3 variants in 48 probands. Overall, our patient cohort contained a significantly higher number of rare CALR3 variants compared to the ExAC population (p = 0.0036). However, after removing a potential Dutch founder variant, no statistically significant difference was found (p = 0.89). In nine probands, the CALR3 variant was accompanied by a disease-causing variant in another, well-known cardiomyopathy gene. In three families, the CALR3 variant did not segregate with the disease. Furthermore, we could not demonstrate calreticulin-3 protein expression in myocardial tissues at various ages. On the basis of these findings, it seems highly questionable that variants in CALR3 are a monogenic cause of cardiomyopathy

Increasing the Legitimacy of Tough Choices in Healthcare Reimbursement: Approach and Results of a Citizen Forum in The Netherlands

Background: Some studies in the Netherlands have gauged public views on principles for health care priority setting, but they fall short of comprehensively explaining the public disapproval of several recent reimbursement decisions. Objective: To obtain insight into citizens’ preferences and identify the criteria they would propose for decisions pertaining to the benefits package of basic health insurance. Methods: Twenty-four Dutch citizens were selected for participation in a Citizen Forum, which involved 3 weekends. Deliberations took place in small groups and in plenary, guided by 2 moderators, on the basis of 8 preselected case studies, which participants later compared and prioritized under the premise that not all treatments can or need to be reimbursed. Participants received opportunities to inform themselves through written brochures and live interactions with 3 experts. Results: The Citizen Forum identified 16 criteria for inclusion or exclusion of treatments in the benefits package; they relate to the condition (2 criteria), treatment (11 criteria), and individual characteristics of those affected by the condition (3 criteria). In most case studies, it was a combination of criteria that determined whether or not participants favored inclusion of the treatment under consideration in the benefits package. Participants differed in their opinion about the relative importance of criteria, and they had difficulty in operationalizing and trading off criteria to provide a recommendation. Conclusions: Informed citizens are prepared to make and, to a certain extent, capable of making reasoned choices about the reimbursement of health services. They realize that choices are both necessary and possible. Broad public support and understanding for making tough choices regarding the benefits package of basic health insurance is not automatic: it requires an investment