The hub & spoke model workstream explores future treatment and care pathways, building on international calls for a hub-and-spoke model approach.

About the workstream

The hub & spoke model workstream explores future treatment and care pathways, building on international calls for a hub-and-spoke model approach. Traditionally, the health needs of people with a bleeding disorder have been addressed by haemophilia treatment centres and/or comprehensive care centres. The roles and links between these tiered centres are due a revision: first, in order to accommodate the safe introduction, use and monitoring of – as well as real-world learnings from – ever evolving novel therapy options, such as ATMPs; and second, to ensure optimal application and use of evolving technologies such as point-of-care devices, telemedicine tools, etc. Both these developments will deeply influence the evolution of disease progression and associated impacts on patients’ physical and mental wellbeing.

Therefore, this workstream considers how such changes can be preemptively addressed, before potentially manifesting as system problems.

Composition

The composition of the workstream aims to reflect the diversity of key actors who have hands-on knowledge of challenges and possible solutions in this thematic area. This includes, but is not limited to: patients, healthcare professionals, industry partners, private companies, policymakers, researchers, and academics. 

The general membership profile is built around required skill sets and may evolve throughout the co-creation process. The initial skill sets include the ability to ‘problem map’ salient points and their relationships, requiring: 

  • Hands-on knowledge of the topic area,
  • Genuine willingness to learn about, and actively contribute to, a systems change culture,
  • Experienced, analytical, open, hands-on ability to remove stakeholder ‘hats’, and
  • Respect of Chatham House Rule and culture of conduct and engagement.

Each workstream brings together 16-20 individuals, which is broad enough to ensure a comprehensive overview, while small enough to be workable.

Workload

The mandate duration and meeting cadence are due to change based on collective needs and decisions. However, the preliminary anticipated commitment is three to four (3-4) hours per meeting, once a semester, trimester or quarterly, subject to the above collective decision.

The workstream met for the first time in Q4 2021.

Public outcome

As part of sharing the outcome of the work of the EHC Think Tank, the first paper from the workstream on hub and spoke model is now published. In this paper, workstream members identify 5 key challenges in the design, implementation, and sustainable operation of hub and spoke models, and propose ways in which resources could be allocated and collaboration fostered.

This paper will be the first in a series of outcomes aiming to synthesise how we might develop a hub and spoke model of care.

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. The Journal of Haemophilia Practice. 2022;9(1): 20-26. https://doi.org/10.2478/jhp-2022-0003

OPEN Health have conducted desk research on gene therapy services in the European Union to understand how the service is currently set up, run, and funded, and how they may change in the future. Potential challenges for access to gene therapies and key gaps have also been identified.

Gene Therapy Landscape by OPEN Health

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