Social pharmaceutical innovation and alternative forms of research, development and deployment for drugs for rare diseases

Rare diseases are associated with difficulties in addressing unmet medical needs, lack of access to treatment, high prices, evidentiary mismatch, equity, etc. While challenges facing the development of drugs for rare diseases are experienced differently globally (i.e., higher vs. lower and middle income countries), many are also expressed transnationally, which suggests systemic issues. Pharmaceutical innovation is highly regulated and institutionalized, leading to firmly established innovation pathways. While deviating from these innovation pathways is difficult, we take the position that doing so is of critical importance. The reason is that the current model of pharmaceutical innovation alone will not deliver the quantity of products needed to address the unmet needs faced by rare disease patients, nor at a price point that is sustainable for healthcare systems. In light of the problems in rare diseases, we hold that re-thinking innovation is crucial and more room should be provided for alternative innovation pathways. We already observe a significant number and variety of new types of initiatives in the rare diseases field that propose or use alternative pharmaceutical innovation pathways which have in common that they involve a diverse set of societal stakeholders, explicitly address a higher societal goal, or both. Our position is that principles of social innovation can be drawn on in the framing and articulation of such alternative pathways, which we term here social pharmaceutical innovation (SPIN), and that it should be given more room for development. As an interdisciplinary research team in the social sciences, public health and law, the cases of SPIN we investigate are spread transnationally, and include higher income as well as middle income countries. We do this to develop a better understanding of the social pharmaceutical innovation field’s breadth and to advance changes ranging from the bedside to system levels. We seek collaborations with those working in such projects (e.g., patients and patient organisations, researchers in rare diseases, industry, and policy makers). We aim to add comparative and evaluative value to social pharmaceutical innovation, and we seek to ignite further interest in these initiatives, thereby actively contributing to them as a part of our work

Blood ties: heredity and coproduction of social and natural orders in the 19th century

Submitted by Claudio Cordovil-Oliveira ([email protected]) on 2017-07-30T19:38:51Z No. of bitstreams: 1 1809-4481-physis-27-02-00297.pdf: 913836 bytes, checksum: d787028d1926f994186276fe0b8e14fc (MD5)Approved for entry into archive by Fátima Lopes ([email protected]) on 2017-08-02T14:34:28Z (GMT) No. of bitstreams: 1 1809-4481-physis-27-02-00297.pdf: 913836 bytes, checksum: d787028d1926f994186276fe0b8e14fc (MD5)Made available in DSpace on 2017-08-02T14:34:28Z (GMT). No. of bitstreams: 1 1809-4481-physis-27-02-00297.pdf: 913836 bytes, checksum: d787028d1926f994186276fe0b8e14fc (MD5) Previous issue date: 2017Fundação Oswaldo Cruz. Escola Nacional de Saúde Pública Sergio Arouca. Rio de Janeiro, RJ, BrasilO presente artigo, baseado em revisão bibliográfica, busca estabelecer relações entre o discurso científico acerca da hereditariedade, surgido no século XIX, e um mito, que fornecerá à burguesia pós-revolucionária de então uma oportuna arma simbólica, que conciliará a noção de justiça com a admissão do caráter natural da desigualdade social. Moldando-se à perfeição ao mito do Gênesis, a Genética, inscrevendo as diferenças em uma espécie de justiça natural, desempenhará este papel. Desta forma, vê-se como uma teoria científica se apresenta como sublimação dos fantasmas de uma sociedade. Mas se a ciência os veste, a ficção os irá despir. Por esta razão, Émile Zola, cujos romances aprofundam a dimensão mítica dos enunciados da ciência, terá aqui uma de suas obras analisadas. O resultado é que algo vem à luz que, de outro modo, permaneceria oculto, sob a máscara transparente da Ciência. Dito de outra forma, o seu impensado, aquilo que ela não se atreveria a verbalizar: a noção de que a falta pesa.This article, based on a bibliographical review, seeks to establish relations between the scientific discourse on heredity, which emerged in the 19th century, and a myth, which will provide the post-revolutionary bourgeoisie with an opportune symbolic weapon that will reconcile the notion of justice with the admission of the natural character of social inequality. Shaping itself perfectly to the myth of Genesis, Genetics, inscribing differences into a kind of natural justice, will play this role. So it is seen as a scientific theory presents itself as sublimation of the phantoms of a society. But if science wears them, fiction will undress them. For this reason, Émile Zola, whose novels deepen the mythical dimension of the statements of science, will have here one of his works analyzed. The result is that something comes to light that would otherwise remain hidden under the transparent mask of Science. Put another way, its unthinking, what it would not dare to verbalize: the notion that lack weighs

Krzysztof Wodiczko: arte crítica e espaço urbano no capitalismo tardio

Submitted by Claudio Cordovil-Oliveira ([email protected]) on 2017-07-30T20:16:57Z No. of bitstreams: 1 113003120932Krzysztof Wodiczko Arte crítica e espaço urbano no capitalismo tardio.pdf: 269062 bytes, checksum: b6b69b29cb590338b8834e6823149245 (MD5)Approved for entry into archive by Fátima Lopes ([email protected]) on 2017-08-07T17:38:48Z (GMT) No. of bitstreams: 1 113003120932Krzysztof Wodiczko Arte crítica e espaço urbano no capitalismo tardio.pdf: 269062 bytes, checksum: b6b69b29cb590338b8834e6823149245 (MD5)Made available in DSpace on 2017-08-07T17:38:48Z (GMT). No. of bitstreams: 1 113003120932Krzysztof Wodiczko Arte crítica e espaço urbano no capitalismo tardio.pdf: 269062 bytes, checksum: b6b69b29cb590338b8834e6823149245 (MD5) Previous issue date: 2003Fundação Oswaldo Cruz. Escola Nacional de Saúde Pública Sergio Arouca. Rio de Janeiro, RJ, BrasilNeste artigo, procuramos responder às seguintes perguntas: "É possível a concepção de uma arte crítica no capitalismo tardio? Em caso afirmativo, que critérios estéticos e concepções culturais deveriam norteá-la? Qual o lugar das teorias críticas do espaço urbano na produção de uma estética mais engajada e consentânea com os desafios de nosso tempo? Como iluminar as contradições culturais do capitalismo através da arte nestes tempos em que "tudo é cultura" e que a política parece esmaecer

O turista acidentado: notas sobre os limites da comunicação intercultural

Submitted by Claudio Cordovil-Oliveira ([email protected]) on 2017-07-30T20:02:02Z No. of bitstreams: 1 3344-10722-1-PB.pdf: 93697 bytes, checksum: 8ce9c8e472b8b3627570fa92bf4f0242 (MD5)Approved for entry into archive by Fátima Lopes ([email protected]) on 2017-08-02T18:52:23Z (GMT) No. of bitstreams: 1 3344-10722-1-PB.pdf: 93697 bytes, checksum: 8ce9c8e472b8b3627570fa92bf4f0242 (MD5)Made available in DSpace on 2017-08-02T18:52:23Z (GMT). No. of bitstreams: 1 3344-10722-1-PB.pdf: 93697 bytes, checksum: 8ce9c8e472b8b3627570fa92bf4f0242 (MD5) Previous issue date: 2005Fundação Oswaldo Cruz. Escola Nacional de Saúde Pública Sergio Arouca. Rio de Janeiro, RJ, BrasilNeste artigo, conflitos interculturais pouco problematizados no debate público, como aqueles observados entre a China e o Ocidente, ganham evidência justamente por se alojarem onde não se esperava encontrá-los: nas asserções de uma das mais influentes jornalistas brasileiras dedicadas ao tema da ‘sociedade da informação’. Tributário dos ideais da cibernética, o conceito de ‘sociedade de comunicação’ revela aqui uma matriz conservadora e heterofóbica, a despeito de afirmações hoje hegemônicas, que falariam a favor de um suposto cosmopolitismo ensejado por estas mídias

Three-dimensional echocardiographic analysis of electromechanical synchrony: comparison with three-dimensional and two-dimensional ejection fraction for evaluation of left ventricular systolic performance

Objective: To compare the three-dimensional echocardiographic analysisof left ventricular (LV) synchrony to LV ejection fraction (LVEF) as measuredby two-dimensional (2D) and three-dimensional (3D) echocardiography(ECHO). Methods: This is a prospective study of 71 patients (41 males,aged 49 ± 11 years), 40 of whom with normal cardiac anatomy (ECHO) andelectrocardiography (ECG) (Group N), and 31 with dilated cardiomyopathy(Group DCM). LVEF, volumes and 16-segment dyssynchrony index % (DI)were measured using 3D-ECHO. LVEF (Simpson’s rule) and volumes weremeasured using 2D-ECHO. Data were compared using Pearson correlationcoefficient (r), 95% CI, linear regression equation and Bland-Altman analysis,p < 0.05. Results: DI% ranged from 0.32 to 21.7% (5.94 ± 6.46), 3D LVEFfrom 0.16 to 0.73 (0.51 ± 0.15); and 2D LVEF from 0.2 to 0.7 (0.47 ± 0.17).The correlation coefficient (r) for DI and 3D LVEF was (r): -0.8203, p <0.0001, CI = -0.8844 to -0.7259, linear regression for DI% (x) and 3D LVEF(y) was y = 63.4515 + (-2.0233) x, p < 0.0001. The correlation coefficient(r) for DI% and 2D LVEF was (r): -0.7046, p < 0.0001, CI = -0.7675 to-0.5824, linear regression for DI% (x) and 2D EF (y) was y = 59.345 +(-3.8721) x, p < 0.0001. Conclusions: Good negative correlation betweenLV synchrony (3D-ECHO) and echocardiographic LVEF (2D and 3D) wasobserved in this series

Social pharmaceutical innovation and alternative forms of research, development and deployment for drugs for rare diseases

Rare diseases are associated with difficulties in addressing unmet medical needs, lack of access to treatment, high prices, evidentiary mismatch, equity, etc. While challenges facing the development of drugs for rare diseases are experienced differently globally (i.e., higher vs. lower and middle income countries), many are also expressed transnationally, which suggests systemic issues. Pharmaceutical innovation is highly regulated and institutionalized, leading to firmly established innovation pathways. While deviating from these innovation pathways is difficult, we take the position that doing so is of critical importance. The reason is that the current model of pharmaceutical innovation alone will not deliver the quantity of products needed to address the unmet needs faced by rare disease patients, nor at a price point that is sustainable for healthcare systems. In light of the problems in rare diseases, we hold that re-thinking innovation is crucial and more room should be provided for alternative innovation pathways. We already observe a significant number and variety of new types of initiatives in the rare diseases field that propose or use alternative pharmaceutical innovation pathways which have in common that they involve a diverse set of societal stakeholders, explicitly address a higher societal goal, or both. Our position is that principles of social innovation can be drawn on in the framing and articulation of such alternative pathways, which we term here social pharmaceutical innovation (SPIN), and that it should be given more room for development. As an interdisciplinary research team in the social sciences, public health and law, the cases of SPIN we investigate are spread transnationally, and include higher income as well as middle income countries. We do this to develop a better understanding of the social pharmaceutical innovation field’s breadth and to advance changes ranging from the bedside to system levels. We seek collaborations with those working in such projects (e.g., patients and patient organisations, researchers in rare diseases, industry, and policy makers). We aim to add comparative and evaluative value to social pharmaceutical innovation, and we seek to ignite further interest in these initiatives, thereby actively contributing to them as a part of our work.Pharmaceutical Sciences, Faculty ofNon UBCReviewedFacultyResearche