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

Detalhes bibliográficos
Autor(a) principal: Douglas, Conor M. W.
Data de Publicação: 2022
Outros Autores: Aith, Fernando, Boon, Wouter, Borba, Marina de Neiva, Doganova, Liliana, Grunebaum, Shir, Hagendijk, Rob, Lynd, Larry, Mallard, Alexandre, Mohamed, Faisal Ali, Moors, Ellen, Cordovil-Oliveira, Claudio, Paterson, Florence, Scanga, Vanessa, Soares, Julino, Raberharisoa, Vololona, Kleinhout-Vliek, Tineke
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Institucional da FIOCRUZ (ARCA)
Texto Completo: https://www.arca.fiocruz.br/handle/icict/55430
Resumo: York University. Department of Science, Technology and Society. Toronto, Canada.
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spelling Douglas, Conor M. W.Aith, FernandoBoon, WouterBorba, Marina de NeivaDoganova, LilianaGrunebaum, ShirHagendijk, RobLynd, LarryMallard, AlexandreMohamed, Faisal AliMoors, EllenCordovil-Oliveira, ClaudioPaterson, FlorenceScanga, VanessaSoares, JulinoRaberharisoa, VololonaKleinhout-Vliek, Tineke2022-11-01T15:12:26Z2022-11-01T15:12:26Z2022DOUGLAS, Conor M. W. et al. Social pharmaceutical innovation and alternative forms of research, development and deployment for drugs for rare diseases. Orphanet J. Rare Diseases, v.17, n.344, 2022.1750-1172https://www.arca.fiocruz.br/handle/icict/5543010.1186/s13023-022-02476-6engBioMed Central (BMC)Social pharmaceutical innovation and alternative forms of research, development and deployment for drugs for rare diseasesinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleYork University. Department of Science, Technology and Society. Toronto, Canada.Universidade de São Paulo. Faculdade de Saúde Pública. Centro de Pesquisa em Direito Sanitário. São Paulo, SP, Brasil.Universiteit Utrecht. Copernicus Institute of Sustainable Development. Netherlands.Universidade de São Paulo. Faculdade de Medicina São Camilo. São Paulo, SP, Brasil.Université PSL. Mines ParisTech. Paris, France.York University. Department of Science and Technology Studies. Toronto, Canada.University of Amsterdam. Faculty of Social and Behavioural Sciences. International School of Social Sciences and Humanities. Amsterdam, The Netherlands.University of British Columbia. Faculty of Pharmaceutical Sciences. Vancouver, Canada.Université PSL in Paris. Center for Social Innovation. Paris, France.York University. Faculty of Health Policy and Equity. Toronto, Canada.Universiteit Utrecht. Copernicus Institute of Sustainable Development. Utrecht, The Netherlands.Fundação Oswaldo Cruz. Escola Nacional de Saúde Pública Sergio Arouca. Rio de Janeiro, RJ, Brasil.Université PSL. Mines ParisTech. Paris, France.York University. Hall Law School. Toronto, Canada.Universidade Federal de São Paulo. Faculdade de Saúde Pública. São Paulo, SP, BrasilUniversité PSL. Mines ParisTech. Paris, France.Universiteit Utrecht. Geosciences, Innovation Studies, Innovation and Sustainability Institute. Utrecht, The Netherlands.Rare diseases are associated with difculties 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 expe‑ rienced diferently globally (i.e., higher vs. lower and middle income countries), many are also expressed transnation‑ ally, which suggests systemic issues. Pharmaceutical innovation is highly regulated and institutionalized, leading to frmly established innovation pathways. While deviating from these innovation pathways is difcult, we take the posi‑ tion 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 signifcant number and variety of new types of initiatives in the rare diseases feld 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 feld’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.Social Pharmaceutical InnovationOrphan DrugsRare DiseasesTherapeutic Research and DevelopmentSocial InnovationPolicyPatient OrganisationsRare DiseasesPolicyinfo:eu-repo/semantics/openAccessreponame:Repositório Institucional da FIOCRUZ (ARCA)instname:Fundação Oswaldo Cruz (FIOCRUZ)instacron:FIOCRUZLICENSElicense.txtlicense.txttext/plain; charset=utf-82991https://www.arca.fiocruz.br/bitstream/icict/55430/1/license.txt5a560609d32a3863062d77ff32785d58MD51ORIGINALs13023-022-02476-6.pdfs13023-022-02476-6.pdfArtigo principalapplication/pdf1067186https://www.arca.fiocruz.br/bitstream/icict/55430/2/s13023-022-02476-6.pdff8d00baa1482832cbaeedca63e2dd875MD52icict/554302022-11-01 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dc.title.en_US.fl_str_mv Social pharmaceutical innovation and alternative forms of research, development and deployment for drugs for rare diseases
title Social pharmaceutical innovation and alternative forms of research, development and deployment for drugs for rare diseases
spellingShingle Social pharmaceutical innovation and alternative forms of research, development and deployment for drugs for rare diseases
Douglas, Conor M. W.
Social Pharmaceutical Innovation
Orphan Drugs
Rare Diseases
Therapeutic Research and Development
Social Innovation
Policy
Patient Organisations
Rare Diseases
Policy
title_short Social pharmaceutical innovation and alternative forms of research, development and deployment for drugs for rare diseases
title_full Social pharmaceutical innovation and alternative forms of research, development and deployment for drugs for rare diseases
title_fullStr Social pharmaceutical innovation and alternative forms of research, development and deployment for drugs for rare diseases
title_full_unstemmed Social pharmaceutical innovation and alternative forms of research, development and deployment for drugs for rare diseases
title_sort Social pharmaceutical innovation and alternative forms of research, development and deployment for drugs for rare diseases
author Douglas, Conor M. W.
author_facet Douglas, Conor M. W.
Aith, Fernando
Boon, Wouter
Borba, Marina de Neiva
Doganova, Liliana
Grunebaum, Shir
Hagendijk, Rob
Lynd, Larry
Mallard, Alexandre
Mohamed, Faisal Ali
Moors, Ellen
Cordovil-Oliveira, Claudio
Paterson, Florence
Scanga, Vanessa
Soares, Julino
Raberharisoa, Vololona
Kleinhout-Vliek, Tineke
author_role author
author2 Aith, Fernando
Boon, Wouter
Borba, Marina de Neiva
Doganova, Liliana
Grunebaum, Shir
Hagendijk, Rob
Lynd, Larry
Mallard, Alexandre
Mohamed, Faisal Ali
Moors, Ellen
Cordovil-Oliveira, Claudio
Paterson, Florence
Scanga, Vanessa
Soares, Julino
Raberharisoa, Vololona
Kleinhout-Vliek, Tineke
author2_role author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
dc.contributor.author.fl_str_mv Douglas, Conor M. W.
Aith, Fernando
Boon, Wouter
Borba, Marina de Neiva
Doganova, Liliana
Grunebaum, Shir
Hagendijk, Rob
Lynd, Larry
Mallard, Alexandre
Mohamed, Faisal Ali
Moors, Ellen
Cordovil-Oliveira, Claudio
Paterson, Florence
Scanga, Vanessa
Soares, Julino
Raberharisoa, Vololona
Kleinhout-Vliek, Tineke
dc.subject.en.en_US.fl_str_mv Social Pharmaceutical Innovation
Orphan Drugs
Rare Diseases
Therapeutic Research and Development
Social Innovation
Policy
Patient Organisations
topic Social Pharmaceutical Innovation
Orphan Drugs
Rare Diseases
Therapeutic Research and Development
Social Innovation
Policy
Patient Organisations
Rare Diseases
Policy
dc.subject.decs.en_US.fl_str_mv Rare Diseases
Policy
description York University. Department of Science, Technology and Society. Toronto, Canada.
publishDate 2022
dc.date.accessioned.fl_str_mv 2022-11-01T15:12:26Z
dc.date.available.fl_str_mv 2022-11-01T15:12:26Z
dc.date.issued.fl_str_mv 2022
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
format article
status_str publishedVersion
dc.identifier.citation.fl_str_mv DOUGLAS, Conor M. W. et al. Social pharmaceutical innovation and alternative forms of research, development and deployment for drugs for rare diseases. Orphanet J. Rare Diseases, v.17, n.344, 2022.
dc.identifier.uri.fl_str_mv https://www.arca.fiocruz.br/handle/icict/55430
dc.identifier.issn.en_US.fl_str_mv 1750-1172
dc.identifier.doi.none.fl_str_mv 10.1186/s13023-022-02476-6
identifier_str_mv DOUGLAS, Conor M. W. et al. Social pharmaceutical innovation and alternative forms of research, development and deployment for drugs for rare diseases. Orphanet J. Rare Diseases, v.17, n.344, 2022.
1750-1172
10.1186/s13023-022-02476-6
url https://www.arca.fiocruz.br/handle/icict/55430
dc.language.iso.fl_str_mv eng
language eng
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.publisher.none.fl_str_mv BioMed Central (BMC)
publisher.none.fl_str_mv BioMed Central (BMC)
dc.source.none.fl_str_mv reponame:Repositório Institucional da FIOCRUZ (ARCA)
instname:Fundação Oswaldo Cruz (FIOCRUZ)
instacron:FIOCRUZ
instname_str Fundação Oswaldo Cruz (FIOCRUZ)
instacron_str FIOCRUZ
institution FIOCRUZ
reponame_str Repositório Institucional da FIOCRUZ (ARCA)
collection Repositório Institucional da FIOCRUZ (ARCA)
bitstream.url.fl_str_mv https://www.arca.fiocruz.br/bitstream/icict/55430/1/license.txt
https://www.arca.fiocruz.br/bitstream/icict/55430/2/s13023-022-02476-6.pdf
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repository.name.fl_str_mv Repositório Institucional da FIOCRUZ (ARCA) - Fundação Oswaldo Cruz (FIOCRUZ)
repository.mail.fl_str_mv repositorio.arca@fiocruz.br
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