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

1 Tai D, Dhar A, Yusuf A, et al. The Royal Free Hospital ‘hub-and-spoke network model’ delivers effective care and increased access to liver transplantation. Public Health 2018; 154: 164–171. doi: 10.1016/j.puhe.2017.10.012. TaiD DharA YusufA The Royal Free Hospital ‘hub-and-spoke network model’ delivers effective care and increased access to liver transplantation Public Health 2018 154 164 171 10.1016/j.puhe.2017.10.012 29248826 Open DOISearch in Google Scholar

2 Calabrò RS, Manuli A, De Cola MC, Bramanti P. Innovation technology in neurorehabilitation: introducing a hub and spoke model to avoid patient “migration” in Sicily. J Health Organ Manag 2020; 34(2): 207–214. doi: 10.1108/JHOM-07-2019-0200. CalabròRS ManuliA De ColaMC BramantiP Innovation technology in neurorehabilitation: introducing a hub and spoke model to avoid patient “migration” in Sicily J Health Organ Manag 2020 34 2 207 214 10.1108/JHOM-07-2019-0200 32017847 Open DOISearch in Google Scholar

3 Srivastava S, Datta V, Garde R, et al. Development of a hub and spoke model for quality improvement in rural and urban healthcare settings in India: a pilot study. BMJ Open Qual 2020; 9(3): e000908. doi: 10.1136/bmjoq-2019-000908. SrivastavaS DattaV GardeR Development of a hub and spoke model for quality improvement in rural and urban healthcare settings in India: a pilot study BMJ Open Qual 2020 9 3 e000908 10.1136/bmjoq-2019-000908 741261032764028 Open DOISearch in Google Scholar

4 Carvalho M, Sepodes B, Martins AP. Patient access to gene therapy medicinal products: a comprehensive review. BMJ Innovations 2021; 7: 123–134. doi: 10.1136/bmjinnov-2020-000425. CarvalhoM SepodesB MartinsAP Patient access to gene therapy medicinal products: a comprehensive review BMJ Innovations 2021 7 123 134 10.1136/bmjinnov-2020-000425 Open DOISearch in Google Scholar

5 Angelis A, Tordrup D, Kanavos P. Socio-economic burden of rare diseases: A systematic review of cost of illness evidence. Health Policy 2015; 119(7): 964–979. doi: 10.1016/j.healthpol.2014.12.016. AngelisA TordrupD KanavosP Socio-economic burden of rare diseases: A systematic review of cost of illness evidence Health Policy 2015 119 7 964 979 10.1016/j.healthpol.2014.12.016 25661982 Open DOISearch in Google Scholar

6 European Association for Haemophilia and Allied Disorders and the European Haemophilia Consortium. EAHAD-EHC Joint Statement on: Promoting hub-and-spoke model for the treatment of haemophilia. May 2020. Available from https://eahad.org/wp-content/uploads/2020/05/Hub-and-Spoke.pdf (accessed 6 December 2021). European Association for Haemophilia and Allied Disorders and the European Haemophilia Consortium EAHAD-EHC Joint Statement on: Promoting hub-and-spoke model for the treatment of haemophilia May 2020 Available from https://eahad.org/wp-content/uploads/2020/05/Hub-and-Spoke.pdf (accessed 6 December 2021). Search in Google Scholar

7 European Commission. European Reference Networks. Available from https://ec.europa.eu/health/ern_en (accessed 6 December 2021). European Commission European Reference Networks Available from https://ec.europa.eu/health/ern_en (accessed 6 December 2021). Search in Google Scholar

8 EuroBloodNet. Objectives. Available from https://eurobloodnet.eu/eurobloodnet/objectives/ (accessed 6 December 2021). EuroBloodNet Objectives Available from https://eurobloodnet.eu/eurobloodnet/objectives/ (accessed 6 December 2021). Search in Google Scholar

9 Moore L, Britten N, Lydahl D, Naldemirci Ö, Elam M, Wolf A. Barriers and facilitators to the implementation of person-centred care in different healthcare contexts. Scand J Caring Sci 2017; 31(4): 662–673. doi: 10.1111/scs.12376. MooreL BrittenN LydahlD NaldemirciÖ ElamM WolfA Barriers and facilitators to the implementation of person-centred care in different healthcare contexts Scand J Caring Sci 2017 31 4 662 673 10.1111/scs.12376 572470427859459 Open DOISearch in Google Scholar

10 Al Shamsi H, Almutairi AG, Al Mashrafi S, Al Kalbani T. Implications of language barriers for healthcare: a systematic review. Oman Med J 2020; 35(2): e122. doi: 10.5001/omj.2020.40. Al ShamsiH AlmutairiAG Al MashrafiS Al KalbaniT Implications of language barriers for healthcare: a systematic review Oman Med J 2020 35 2 e122 10.5001/omj.2020.40 720140132411417 Open DOISearch in Google Scholar

11 EUHANET. European guidelines for the certification of haemophilia centres. 2013. Available from http://www.euhanet.org/docs/Euhanet-European_guidelines_for_the_certification_of_Haemophilia_Centres_2013.pdf (accessed 13 December 2021). EUHANET European guidelines for the certification of haemophilia centres 2013 Available from http://www.euhanet.org/docs/Euhanet-European_guidelines_for_the_certification_of_Haemophilia_Centres_2013.pdf (accessed 13 December 2021). Search in Google Scholar

12 Colvin BT, Astermark J, Fischer K, et al., for the Interdisciplinary Working Group. European principels of haemophilia care. Haemophilia 2008; 14: 361–374. doi: 10.1111/j.1365-2516.2007.01625.x. ColvinBT AstermarkJ FischerK for the Interdisciplinary Working Group European principels of haemophilia care Haemophilia 2008 14 361 374 10.1111/j.1365-2516.2007.01625.x 18248408 Open DOISearch in Google Scholar

13 Makris M, Calizzani G, Fischer K, et al. The European Haemophilia Network (EUHANET). Blood Transfus 2014; 12(suppl 3): s515–s518. doi: 10.2450/2014.0008-14s. MakrisM CalizzaniG FischerK The European Haemophilia Network (EUHANET) Blood Transfus 2014 12 suppl 3 s515 s518 10.2450/2014.0008-14s 404479624922291 Open DOISearch in Google Scholar

14 EAHAD. European Haemophilia Network (EUHANET). Available from https://eahad.org/euhanet/ (accessed 6 December 2021). EAHAD European Haemophilia Network (EUHANET) Available from https://eahad.org/euhanet/ (accessed 6 December 2021). Search in Google Scholar

15 Tumiene B, Graessner H. Rare disease care pathways in the EU: from odysseys and labyrinths towards highways. J Community Genet 2021; 12: 231–239. doi: 10.1007/s12687-021-00520-9. TumieneB GraessnerH Rare disease care pathways in the EU: from odysseys and labyrinths towards highways J Community Genet 2021 12 231 239 10.1007/s12687-021-00520-9 814107933738760 Open DOISearch in Google Scholar

16 Scherr JF, Albright C, de los Reyes E. Utilizing telehealth to create a clinical model of care for patients with Batten disease and other rare diseases. Ther Adv Rare Dis 2021; 2: 1–12. doi: 10.1177/26330040211038564. ScherrJF AlbrightC de los ReyesE Utilizing telehealth to create a clinical model of care for patients with Batten disease and other rare diseases Ther Adv Rare Dis 2021 2 1 12 10.1177/26330040211038564 Open DOISearch in Google Scholar

17 Walton H, Simpsom A, Ramsay AIG, et al. Developing a taxonomy of care coordination for people living with rare conditions: A qualitative study. 2021. medRxiv. doi: 10.1101/2021.11.16.21266387. WaltonH SimpsomA RamsayAIG Developing a taxonomy of care coordination for people living with rare conditions: A qualitative study 2021 medRxiv. 10.1101/2021.11.16.21266387 Open DOISearch in Google Scholar

18 Miesbach W, Chowdary P, Coppens M, et al. Delivery of AAV-based gene therapy through haemophilia centres – A need for re-evaluation of infrastructure in comprehensive care: A joint publication of EAHAD and EHC. Haemophilia 2021; 27(6): 967–973. doi: 10.1111/hae.14420. MiesbachW ChowdaryP CoppensM Delivery of AAV-based gene therapy through haemophilia centres – A need for re-evaluation of infrastructure in comprehensive care: A joint publication of EAHAD and EHC Haemophilia 2021 27 6 967 973 10.1111/hae.14420 34553460 Open DOISearch in Google Scholar

19 Srivastava S. Cell and gene therapy is transforming healthcare. Part 2. Cell & Gene. 13 February 2020. Available from https://www.cellandgene.com/doc/part-cell-and-gene-therapy-is-transforming-healthcare-0001 (accessed 11 January 2022). SrivastavaS Cell and gene therapy is transforming healthcare. Part 2. Cell & Gene 13 February 2020 Available from https://www.cellandgene.com/doc/part-cell-and-gene-therapy-is-transforming-healthcare-0001 (accessed 11 January 2022). Search in Google Scholar

20 EHC. Think Tank. Available from https://www.ehc.eu/thinktank/ (accessed 12 November 2021). EHC Think Tank Available from https://www.ehc.eu/thinktank/ (accessed 12 November 2021). Search in Google Scholar

21 Chatham House. Chatham House rule. Available from https://www.chathamhouse.org/about-us/chatham-house-rule (accessed 12 November 2021). Chatham House Chatham House rule Available from https://www.chathamhouse.org/about-us/chatham-house-rule (accessed 12 November 2021). Search in Google Scholar