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Hereditary angioedema (HAE) is a disease which is associated with random and often unpredictable attacks of painful swelling typically affecting the extremities, bowel mucosa, genitals, face and upper airway. Attacks are associated with significant functional impairment, decreased Health Related Quality of Life, and mortality in the case of laryngeal attacks. Caring for patients with HAE can be challenging due to the complexity of this disease. The care of patients with HAE in Canada is neither optimal nor uniform across the country. It lags behind other countries where there are more organized models for HAE management, and where additional therapeutic options are licensed and available for use. The objective of this guideline is to provide graded recommendations for the management of patients in Canada with HAE. This includes the treatment of attacks, short-term prophylaxis, long-term prophylaxis, and recommendations for self-administration, individualized therapy, quality of life, and comprehensive care. It is anticipated that by providing this guideline to caregivers, policy makers, patients and their advocates, that there will be an improved understanding of the current recommendations regarding management of HAE and the factors that need to be considered when choosing therapies and treatment plans for individual patients. The primary target users of this guideline are healthcare providers who are managing patients with HAE. Other healthcare providers who may use this guideline are emergency physicians, gastroenterologists, dentists and otolaryngologists, who will encounter patients with HAE and need to be aware of this condition. Hospital administrators, insurers and policy makers may also find this guideline helpful.
Background We published the Canadian 2003 International Consensus Algorithm for the Diagnosis, Therapy, and Management of Hereditary Angioedema (HAE; C1 inhibitor [C1-INH] deficiency) and updated this as Hereditary angioedema: a current state-of-the-art review: Canadian Hungarian 2007 International Consensus Algorithm for the Diagnosis, Therapy, and Management of Hereditary Angioedema. Objective To update the International Consensus Algorithm for the Diagnosis, Therapy and Management of Hereditary Angioedema (circa 2010). Methods The Canadian Hereditary Angioedema Network (CHAEN)/Reseau Canadien d'angioedeme hereditaire (RCAH) (www.haecanada.com) and cosponsors University of Calgary and the Canadian Society of Allergy and Clinical Immunology (with an unrestricted educational grant from CSL Behring) held our third Conference May 15th to 16th, 2010 in Toronto Canada to update our consensus approach. The Consensus document was reviewed at the meeting and then circulated for review. Results This manuscript is the 2010 International Consensus Algorithm for the Diagnosis, Therapy and Management of Hereditary Angioedema that resulted from that conference. Conclusions Consensus approach is only an interim guide to a complex disorder such as HAE and should be replaced as soon as possible with large phase III and IV clinical trials, meta analyses, and using data base registry validation of approaches including quality of life and cost benefit analyses, followed by large head-to-head clinical trials and then evidence-based guidelines and standards for HAE disease management.
What does it mean to design democratic innovation from a deliberative systems perspective? The demand of the deliberative systems approach that we turn from the single forum towards the broader system has largely been embraced by those interested in designing institutions for citizen participation. Nevertheless, there has been no analysis of the practical implications for democratic innovation. Is it possible to design differentiated but interconnected participatory and deliberative settings? Does this better connect democratic innovations to mass politics? Does it promote greater legitimacy? This article analyses one such attempt to design a systems-oriented democratic innovation: the ambitious NHS Citizen initiative. Our analysis demonstrates, while NHS Citizen pioneered some cutting-edge participatory design, it ultimately failed to resolve (and in some cases exacerbated) well-known obstacles to institutionalisation as well as generating new challenges. To effectively realise democratic renewal and reform, systems-oriented democratic innovation must evolve strategies to meet these challenges.
The theory and practice of urban governance in recent years has undergone both a collaborative and participatory turn. The strong connection between collaboration and participation has meant that citizen participation in urban governance has been conceived in a very particular way: as varying levels of partnership between state actors and citizens. This over-focus on collaboration has led to: 1) a dearth of proposals in theory and practice for citizens to engage oppositionally with institutions; 2) the miscasting of agonistic opportunities for participation as forms of collaboration; 3) an inability to recognise the irruption of agonistic practices into participatory procedures. This article attempts to expand the conception of participatory urban governance by adapting Rosanvallon’s (2008) three democratic counter-powers—prevention, oversight and judgement—to consider options for institutionalising agonistic participatory practices. It argues that these counter-governance processes would more fully realise the inclusion agenda that underpins the participatory governance project.
The notion that democracy is a system is ever present in democratic theory. However, what it means to think systemically about democracy (as opposed to what it means for a political system to be democratic) is under-elaborated. This article sets out a meta-level framework for thinking systemically about democracy, built upon seven conceptual building blocks, which we term (1) functions, (2) norms, (3) practices, (4) actors, (5) arenas, (6) levels, and (7) interactions. This enables us to systematically structure the debate on democratic systems, highlighting the commonalities and differences between systems approaches, their omissions, and the key questions that remain to be answered. It also enables us to push the debate forward both by demonstrating how a full consideration of all seven building blocks would address issues with existing approaches and by introducing new conceptual clarifications within those building blocks.
Participatory policy making is a contested concept that can be understood in multiple ways. So how do those involved with participatory initiatives make sense of contrasting ideas of participation? What purposes and values do they associate with participatory governance? This paper reflects on a Q‐method study with a range of actors, from citizen activists to senior civil servants, involved with participatory initiatives in U.K. social policy. Using principal components analysis, supplemented with data from qualitative interviews, it identifies three shared participation preferences: participation as collective decision making, participation as knowledge transfer, and participation as agonism. These preferences demonstrate significant disagreements between the key informants, particularly concerning the objectives of participation, how much power should be afforded to the public, and what motivates people to participate. Their contrasting normative orientations are used to highlight how participatory governance theory and practice frequently fails to take seriously legitimate diversity in procedural preferences. Moreover, it is argued that, despite the diversity of preferences, there is a lack of imagination about how participation can function when social relations are conflictual.
Für seinen Artikel »Beyond radicalism and resignation: the competing logics for public participation in policy decisions«, der 2017 in der Zeitschrift Policy & Politics erschienen ist, hat Dr. Rikki John Dean, wissenschaftlicher Mitarbeiter am Lehrstuhl von Prof. Brigitte Geißel/Institut für Politikwissenschaft, den »Bleddyn Davies prize for the best Early Career paper published in 2017« erhalten. Der UniReport hatte die Gelegenheit, Dean einige Fragen zu seiner Forschung zu stellen.
Beyond radicalism and resignation: the competing logics for public participation in policy decisions
(2016)
Participation – like justice or freedom – is a term that can be constructed in multiple ways. However, existing typologies of participation pay little attention to the alternative logics for public participation in policy decisions: either they assume one particular normative bias or categorise by institutional design features without reference to the broader ideology that informs the use of these designs. This paper outlines an alternative approach that connects the variety in participatory practices to competing theories of democracy and public administration. It identifies four archetypes of participation: knowledge transfer; collective decision-making; choice and voice; and arbitration and oversight.
Objective: To examine risk of malignancy and death in patients with kidney transplant who receive the immunosuppressive drug sirolimus.
Design: Systematic review and meta-analysis of individual patient data.
Data sources: Medline, Embase, and the Cochrane Central Register of Controlled Trials from inception to March 2013.
Eligibility: Randomized controlled trials comparing immunosuppressive regimens with and without sirolimus in recipients of kidney or combined pancreatic and renal transplant for which the author was willing to provide individual patient level data. Two reviewers independently screened titles/abstracts and full text reports of potentially eligible trials to identify studies for inclusion. All eligible trials reported data on malignancy or survival.
Results: The search yielded 2365 unique citations. Patient level data were available from 5876 patients from 21 randomized trials. Sirolimus was associated with a 40% reduction in the risk of malignancy (adjusted hazard ratio 0.60, 95% confidence interval 0.39 to 0.93) and a 56% reduction in the risk of non-melanoma skin cancer (0.44, 0.30 to 0.63) compared with controls. The most pronounced effect was seen in patients who converted to sirolimus from an established immunosuppressive regimen, resulting in a reduction in risk of malignancy (0.34, 0.28 to 0.41), non-melanoma skin cancer (0.32, 0.24 to 0.42), and other cancers (0.52, 0.38 to 0.69). Sirolimus was associated with an increased risk of death (1.43, 1.21 to 1.71) compared with controls.
Conclusions: Sirolimus was associated with a reduction in the risk of malignancy and non-melanoma skin cancer in transplant recipients. The benefit was most pronounced in patients who converted from an established immunosuppressive regimen to sirolimus. Given the risk of mortality, however, the use of this drug does not seem warranted for most patients with kidney transplant. Further research is needed to determine if different populations, such as those at high risk of cancer, might benefit from sirolimus.