System change in practice: A report from the EHC Think Tank workstreams on Registries and Patient Agency
System change addresses the fundamental causes of persistent, complex problems to achieve large-scale, sustainable solutions at multiple levels. Recognising the need for system change to ensure equitable access to healthcare for people with bleeding disorders and other rare diseases, the European Ha...
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| Main Authors: | , |
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| Format: | Article |
| Language: | English |
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Sciendo
2024-02-01
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| Series: | The Journal of Haemophilia Practice |
| Subjects: | |
| Online Access: | https://doi.org/10.2478/jhp-2024-0005 |
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| _version_ | 1832570308574314496 |
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| author | Gacser Zita Skouw-Rasmussen Naja |
| author_facet | Gacser Zita Skouw-Rasmussen Naja |
| author_sort | Gacser Zita |
| collection | DOAJ |
| description | System change addresses the fundamental causes of persistent, complex problems to achieve large-scale, sustainable solutions at multiple levels. Recognising the need for system change to ensure equitable access to healthcare for people with bleeding disorders and other rare diseases, the European Haemophilia Consortium (EHC) established a Think Tank to work alongside its traditional advocacy initiatives. The Think Tank has mobilised a broad range of healthcare stakeholders to identify challenges and co-create potential solutions through a series of thematic workstreams exploring specific aspects of the healthcare system. This paper reports on outcomes and learnings from the Registries and Patient Agency workstreams. |
| format | Article |
| id | doaj-art-79a855f73042434b88fa52effe2d7257 |
| institution | Kabale University |
| issn | 2055-3390 |
| language | English |
| publishDate | 2024-02-01 |
| publisher | Sciendo |
| record_format | Article |
| series | The Journal of Haemophilia Practice |
| spelling | doaj-art-79a855f73042434b88fa52effe2d72572025-02-02T15:48:30ZengSciendoThe Journal of Haemophilia Practice2055-33902024-02-0111111010.2478/jhp-2024-0005System change in practice: A report from the EHC Think Tank workstreams on Registries and Patient AgencyGacser Zita0Skouw-Rasmussen Naja1European Haemophilia Consortium, Brussels, BelgiumEuropean Haemophilia Consortium, Brussels, BelgiumSystem change addresses the fundamental causes of persistent, complex problems to achieve large-scale, sustainable solutions at multiple levels. Recognising the need for system change to ensure equitable access to healthcare for people with bleeding disorders and other rare diseases, the European Haemophilia Consortium (EHC) established a Think Tank to work alongside its traditional advocacy initiatives. The Think Tank has mobilised a broad range of healthcare stakeholders to identify challenges and co-create potential solutions through a series of thematic workstreams exploring specific aspects of the healthcare system. This paper reports on outcomes and learnings from the Registries and Patient Agency workstreams.https://doi.org/10.2478/jhp-2024-0005registriespatient agencymappingco-creation |
| spellingShingle | Gacser Zita Skouw-Rasmussen Naja System change in practice: A report from the EHC Think Tank workstreams on Registries and Patient Agency The Journal of Haemophilia Practice registries patient agency mapping co-creation |
| title | System change in practice: A report from the EHC Think Tank workstreams on Registries and Patient Agency |
| title_full | System change in practice: A report from the EHC Think Tank workstreams on Registries and Patient Agency |
| title_fullStr | System change in practice: A report from the EHC Think Tank workstreams on Registries and Patient Agency |
| title_full_unstemmed | System change in practice: A report from the EHC Think Tank workstreams on Registries and Patient Agency |
| title_short | System change in practice: A report from the EHC Think Tank workstreams on Registries and Patient Agency |
| title_sort | system change in practice a report from the ehc think tank workstreams on registries and patient agency |
| topic | registries patient agency mapping co-creation |
| url | https://doi.org/10.2478/jhp-2024-0005 |
| work_keys_str_mv | AT gacserzita systemchangeinpracticeareportfromtheehcthinktankworkstreamsonregistriesandpatientagency AT skouwrasmussennaja systemchangeinpracticeareportfromtheehcthinktankworkstreamsonregistriesandpatientagency |