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System change in practice: A report from the EHC Think Tank workstreams on Registries and Patient Agency

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Hilton K, Anderson A. IHI Psychology of Change Framework to Advance and Sustain Improvement. IHI White Paper. Boston, Massachusetts: Institute for Healthcare Improvement; 2018. Available from https://www.ihi.org/resources/white-papers (accessed December 2023). Hilton K Anderson A. IHI Psychology of Change Framework to Advance and Sustain Improvement. IHI White Paper . Boston, Massachusetts : Institute for Healthcare Improvement ; 2018 . Available from https://www.ihi.org/resources/white-papers ( accessed December 2023 ). Search in Google Scholar

Atun R. Health systems, systems thinking and innovation. Health Policy Plan 2012; 27 Suppl 4: iv4-iv8. doi: 10.1093/heapol/czs088. Atun R. Health systems, systems thinking and innovation . Health Policy Plan 2012 ; 27 Suppl 4: iv4-iv8. doi: 10.1093/heapol/czs088 . Open DOISearch in Google Scholar

Carey G, Malbon E, Carey N, et al. Systems science and systems thinking for public health: a systematic review. BMJ Open 2015; 5(2): e009002. doi: 10.1136/bmjopen-2015-009002. Carey G Malbon E Carey N . Systems science and systems thinking for public health: a systematic review . BMJ Open 2015 ; 5 ( 2 ) : e009002. doi: 10.1136/bmjopen-2015-009002 . Open DOISearch in Google Scholar

Nilsen P, Seing I, Ericsson C, et al. Characteristics of successful changes in health care organizations: an interview study with physicians, registered nurses and assistant nurses. BMC Health Serv Res 2020; 20: 147. doi: 10.1186/s12913-020-4999-8. Nilsen P Seing I Ericsson C . Characteristics of successful changes in health care organizations: an interview study with physicians, registered nurses and assistant nurses . BMC Health Serv Res 2020 ; 20 : 147 . doi: 10.1186/s12913-020-4999-8 . Open DOISearch in Google Scholar

Zimlichman E, Nicklin W, Aggarwal R, Bates DW. Healthcare 2030: the coming transformation. NEJM Catalyst March 3 2021. doi: 10.1056/CAT.20.0569. Zimlichman E Nicklin W Aggarwal R Bates DW. Healthcare 2030: the coming transformation . NEJM Catalyst March 3 2021 . doi: 10.1056/CAT.20.0569 . Open DOISearch in Google Scholar

Bok A, Noone D, Skouw-Rasmussen N; EHC Think Tank. Key challenges for patient registries – A report from the 1st workshop of the EHC Think Tank Workstream on Registries. J Haem Pract 2022; 9 (1): 14-19. doi: 10.2478/jhp-2022-0002. Bok A Noone D Skouw-Rasmussen N EHC Think Tank . Key challenges for patient registries – A report from the 1st workshop of the EHC Think Tank Workstream on Registries . J Haem Pract 2022 ; 9 ( 1 ): 14 - 19 . doi: 10.2478/jhp-2022-0002 . Open DOISearch in Google Scholar

Bok A, Noone D, Skouw-Rasmussen N; EHC Think Tank. Key challenges for hub and spoke models of care – A report from the 1st workshop of the EHC Think Tank on Hub and Spoke Treatment Models. J Haem Pract 2022; 9 (1): 20-26. doi: 10.2478/jhp-2022-0003. Bok A Noone D Skouw-Rasmussen N EHC Think Tank . Key challenges for hub and spoke models of care – A report from the 1st workshop of the EHC Think Tank on Hub and Spoke Treatment Models . J Haem Pract 2022 ; 9 ( 1 ): 20 - 26 . doi: 10.2478/jhp-2022-0003 . Open DOISearch in Google Scholar

Bok A, Noone D, Skouw-Rasmussen N; EHC Think Tank. Patient agency: key questions and challenges – A report from the 1st workshop of the EHC Think Tank Workstream on Patient Agency. J Haem Pract 2022; 9 (1): 27-35. doi: 10.2478/jhp-2022-0004. Bok A Noone D Skouw-Rasmussen N EHC Think Tank . Patient agency: key questions and challenges – A report from the 1st workshop of the EHC Think Tank Workstream on Patient Agency . J Haem Pract 2022 ; 9 ( 1 ): 27 - 35 . doi: 10.2478/jhp-2022-0004 . Open DOISearch in Google Scholar

Skouw-Rasmussen N, Savini L, on behalf of the EHC Think Tank. Access equity: key questions and challenges – A report from the 1st workshop of the European Haemophilia Consortium (EHC) Think Tank Workstream on Access Equity. J Haem Pract 2023; 10(1). doi: 10.2478/jhp-2023-0011. Skouw-Rasmussen N Savini L on behalf of the EHC Think Tank . Access equity: key questions and challenges – A report from the 1st workshop of the European Haemophilia Consortium (EHC) Think Tank Workstream on Access Equity . J Haem Pract 2023 ; 10 ( 1 ). doi: 10.2478/jhp-2023-0011 . Open DOISearch in Google Scholar

Skouw-Rasmussen N, Savini L, on behalf of the EHC Think Tank. Future Care Pathways – A report from the 1st workshop of the EHC Think Tank Workstream on Future Care Pathways. J Haem Pract 2023; 10(1). doi: 10.2478/jhp-2023-0013. Skouw-Rasmussen N Savini L on behalf of the EHC Think Tank . Future Care Pathways – A report from the 1st workshop of the EHC Think Tank Workstream on Future Care Pathways . J Haem Pract 2023 ; 10 ( 1 ). doi: 10.2478/jhp-2023-0013 . Open DOISearch in Google Scholar

Bok A, Noone D, Skouw-Rasmussen N, on behalf of the EHC Think Tank. Short- and longer-term goals for change – A report from the 2nd workshops of the EHC Think Tank Workstreams on Registries, the Hub and Spoke Model and Patient Agency. J Haem Pract 2023; 10(1). doi: 10.2478/jhp-2023-0001. Bok A Noone D Skouw-Rasmussen N on behalf of the EHC Think Tank . Short- and longer-term goals for change – A report from the 2nd workshops of the EHC Think Tank Workstreams on Registries, the Hub and Spoke Model and Patient Agency . J Haem Pract 2023 ; 10 ( 1 ). doi: 10.2478/jhp-2023-0001 . Open DOISearch in Google Scholar

Gacser Z, Skouw-Rasmussen N, Bourke S, ten Ham R, Hosszú D. Short- and longer-term goals for change – A report from the 2nd workshops of the EHC Think Tank Workstreams on Access Equity and Future Care Pathways. J Haem Pract 2023; 10(1): 155-163. doi: 10.2478/jhp-2023-0023. Gacser Z Skouw-Rasmussen N Bourke S ten Ham R Hosszú D. Short- and longer-term goals for change – A report from the 2nd workshops of the EHC Think Tank Workstreams on Access Equity and Future Care Pathways . J Haem Pract 2023 ; 10 ( 1 ): 155 - 163 . doi: 10.2478/jhp-2023-0023 . Open DOISearch in Google Scholar

Knowles SE, Allen D, Donnelly A, et al. More than a method: trusting relationships, productive tensions, and two-way learning as mechanisms of authentic co-production. Res Involv Engagem 2021; 7(1): 34. doi: 10.1186/s40900-021-00262-5. Knowles SE Allen D Donnelly A . More than a method: trusting relationships, productive tensions, and two-way learning as mechanisms of authentic co-production . Res Involv Engagem 2021 ; 7 ( 1 ): 34 . doi: 10.1186/s40900-021-00262-5 . Open DOISearch in Google Scholar

Goodman M. Systems thinking: what, why, when, where and how? The Systems Thinker. Available from https://thesystemsthinker.com/systems-thinking-what-why-when-where-and-how/ (accessed December 2023). Goodman M. Systems thinking: what, why, when, where and how? The Systems Thinker . Available from https://thesystemsthinker.com/systems-thinking-what-why-when-where-and-how/ ( accessed December 2023 ). Search in Google Scholar

EHC Think Tank. Registries | System map of the underlying challenges. Available from https://ehcthinktank.eu/workstream/workstream-one-registries/ (accessed January 2024). EHC Think Tank . Registries | System map of the underlying challenges . Available from https://ehcthinktank.eu/workstream/workstream-one-registries/ ( accessed January 2024 ). Search in Google Scholar

European Haemophilia Consortium. EHC Think Tank Registry Mapping – An overview of rare bleeding disorder registries across Europe. Copenhagen Economics, 2023. Available from https://ehcthinktank.eu/wp-content/uploads/2522/15/EHC-Think-Tank-Registry-Mapping_Final.pdf (accessed December 2023). European Haemophilia Consortium . EHC Think Tank Registry Mapping – An overview of rare bleeding disorder registries across Europe . Copenhagen Economics , 2023 . Available from https://ehcthinktank.eu/wp-content/uploads/2522/15/EHC-Think-Tank-Registry-Mapping_Final.pdf ( accessed December 2023 ). Search in Google Scholar

European Commission. European Health Data Space. Available from https://health.ec.europa.eu/ehealth-digital-health-and-care/european-health-data-space_en#more-information (accessed December 2023). European Commission . European Health Data Space . Available from https://health.ec.europa.eu/ehealth-digital-health-and-care/european-health-data-space_en#more-information ( accessed December 2023 ). Search in Google Scholar

Wilkinson M, Dumontier M, Aalbersberg I, et al. The FAIR Guiding Principles for scientific data management and stewardship. Sci Data 2016; 3: 160018. doi: 10.1038/sdata.2016.18. Wilkinson M Dumontier M Aalbersberg I . The FAIR Guiding Principles for scientific data management and stewardship . Sci Data 2016 ; 3 : 160018 . doi: 10.1038/sdata.2016.18 . Open DOISearch in Google Scholar

OPEN Health. Targeted literature review – Understanding the description and application of patient agency in the healthcare context. Prepared for the European Haemophilia Consortium (EHC). 30 August 2022. Available from https://ehcthinktank.eu/wp-content/uploads/2022/10/OH-EHC-Patient-Agency_Literature-review_310822_FINAL.pdf (accessed December 2023). OPEN Health . Targeted literature review – Understanding the description and application of patient agency in the healthcare context . Prepared for the European Haemophilia Consortium (EHC) . 30 August 2022 . Available from https://ehcthinktank.eu/wp-content/uploads/2022/10/OH-EHC-Patient-Agency_Literature-review_310822_FINAL.pdf ( accessed December 2023 ). Search in Google Scholar

Michie S, van Stralen MM, West R. The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implement Sci 2011; 6: 42. doi: 10.1186/1748-5908-6-42. Michie S van Stralen MM West R. The behaviour change wheel: a new method for characterising and designing behaviour change interventions . Implement Sci 2011 ; 6 : 42 . doi: 10.1186/1748-5908-6-42 . Open DOISearch in Google Scholar

Social Change UK. A guide on the COM-B model of behaviour. Available from https://social-change.co.uk/files/02.09.19_COM-B_and_changing_behaviour_.pdf (accessed December 2023). Social Change UK . A guide on the COM-B model of behaviour . Available from https://social-change.co.uk/files/02.09.19_COM-B_and_changing_behaviour_.pdf ( accessed December 2023 ). Search in Google Scholar

EHC Think Tank. Patient Agency | System map of the underlying challenges. Available from https://ehcthinktank.eu/workstream/workstream-three-patient-agency/ (accessed January 2024). EHC Think Tank . Patient Agency | System map of the underlying challenges . Available from https://ehcthinktank.eu/workstream/workstream-three-patient-agency/ ( accessed January 2024 ). Search in Google Scholar

Chin MH, Afsar-Manesh N, Bierman AS, et al. Guiding principles to address the impact of algorithm bias on racial and ethnic disparities in health and health care. JAMA Netw Open 2023; 6(12): e2345050. doi: 10.1001/jamanetworkopen.2023/45050. Chin MH Afsar-Manesh N Bierman AS . Guiding principles to address the impact of algorithm bias on racial and ethnic disparities in health and health care . JAMA Netw Open 2023 ; 6 ( 12 ) : e2345050. doi: 10.1001/jamanetworkopen.2023/45050 . Open DOISearch in Google Scholar

US Food and Drug Administration. Patient-focused drug development: collecting comprehensive and representative input. Guidance for industry, Food and Drug Administration Staff, and other stakeholders. June 2020 Procedural. Available from https://www.fda.gov/regulatory-information/search-fda-guidance-documents/patient-focused-drug-development-collecting-comprehensive-and-representative-input (accessed January 2024). US Food and Drug Administration . Patient-focused drug development: collecting comprehensive and representative input . Guidance for industry, Food and Drug Administration Staff, and other stakeholders . June 2020 Procedural. Available from https://www.fda.gov/regulatory-information/search-fda-guidance-documents/patient-focused-drug-development-collecting-comprehensive-and-representative-input ( accessed January 2024 ). Search in Google Scholar

Oerhlein EM, Burcu M, Schoch S, Gressler LE. Enhancing patient centricity of real-world data research: an exploratory analysis using the patient experience mapping tool. Value Health 2023; 26(1): 10-17. doi: 10.1016/j.jval.2022-10-002. Oerhlein EM Burcu M Schoch S Gressler LE. Enhancing patient centricity of real-world data research: an exploratory analysis using the patient experience mapping tool . Value Health 2023 ; 26 ( 1 ): 10 - 17 . doi: 10.1016/j.jval.2022-10-002 . Open DOISearch in Google Scholar

Escontrías OA. Dossiers: a new way of alleviating the disorganization of patient experience data. National Health Council. 16 November 2023. Available from https://nationalhealthcouncil.org/blog/dossiers-a-new-way-of-alleviating-the-disorganization-of-patient-experience-data/ (accessed December 2023). Escontrías OA. Dossiers: a new way of alleviating the disorganization of patient experience data . National Health Council . 16 November 2023 . Available from https://nationalhealthcouncil.org/blog/dossiers-a-new-way-of-alleviating-the-disorganization-of-patient-experience-data/ ( accessed December 2023 ). Search in Google Scholar

Irwin RS, Richardson ND. Patient-focused care: using the right tools. Chest 2006; 130(1 Suppl): 73S-82S. doi: 10.1378/chest.130.1_suppl.73S. Irwin RS Richardson ND. Patient-focused care: using the right tools . Chest 2006 ; 130 (1 Suppl): 73S-82S. doi: 10.1378/chest.130.1_suppl.73S . Open DOISearch in Google Scholar

Epstein RM, Street RL. The values and value of patientcentered care. Ann Fam Med 2011; 9(2): 100-103. doi: 10.1370/afm.1239. Epstein RM Street RL. The values and value of patientcentered care . Ann Fam Med 2011 ; 9 ( 2 ): 100 - 103 . doi: 10.1370/afm.1239 . Open DOISearch in Google Scholar

Rathert C, Wyrwich MD, Boren SA. Patient-centered care and outcomes: a systematic review of the literature. Med Care Res Rev 2013; 70(4): 351-79. doi: 10.1177/1077558712465774. Rathert C Wyrwich MD Boren SA. Patient-centered care and outcomes: a systematic review of the literature . Med Care Res Rev 2013 ; 70 ( 4 ): 351 - 79 . doi: 10.1177/1077558712465774 . Open DOISearch in Google Scholar

More T, Cano SJ. Measuring what matters to rare disease patients – reflections on the work by the IRDiRC taskforce on patient-centered outcome measures. Orphanet J Rare Dis 2017; 12: 171. doi: 10.1186/s13023-017-0718-x. More T Cano SJ. Measuring what matters to rare disease patients – reflections on the work by the IRDiRC taskforce on patient-centered outcome measures . Orphanet J Rare Dis 2017 ; 12 : 171 . doi: 10.1186/s13023-017-0718-x . Open DOISearch in Google Scholar

Swanson RC, Cattaneo A, Bradley E, et al. Rethinking health systems strengthening: key systems thinking tools and strategies for transformational change. Health Policy Plan 2012; 27 Suppl 4: iv54-61. doi: 10.1093/heapol/czd090. Swanson RC Cattaneo A Bradley E . Rethinking health systems strengthening: key systems thinking tools and strategies for transformational change . Health Policy Plan 2012 ; 27 Suppl 4: iv54-61. doi: 10.1093/heapol/czd090 . Open DOISearch in Google Scholar

Wilkinson H, Hills D, Penn A, Barbrook-Johnson P. Building a system-based theory of change using participatory systems mapping. Evaluation 2021; 27(1): 80-101. doi: 10.1177/1356389020980493. Wilkinson H Hills D Penn A Barbrook-Johnson P. Building a system-based theory of change using participatory systems mapping . Evaluation 2021 ; 27 ( 1 ): 80 - 101 . doi: 10.1177/1356389020980493 . Open DOISearch in Google Scholar

European Haemophilia Consortium. Think Tank. Available from https://ehcthinktank.eu (accessed January 2024). European Haemophilia Consortium . Think Tank . Available from https://ehcthinktank.eu ( accessed January 2024 ). Search in Google Scholar

Chatham House. Chatham House rule. Available from https://www.chathamhouse.org/about-us/chatham-house-rule (accessed January 2024). Chatham House . Chatham House rule . Available from https://www.chathamhouse.org/about-us/chatham-house-rule ( accessed January 2024 ). Search in Google Scholar

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