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Reference:  The view of experts on initiatives to be undertaken to promote equity in the access to orphan drugs and specialised care for rare diseases in Spain: A Delphi consensus. Torrent-Farnell at al 2018

This week’s paper of the week is brought to you by Professor Sir Muir Gray, 3V Executive Director.

Bottom line

Delivering equity for rare diseases in healthcare is difficult, with no simple solution. What is required is a process that adopts “reasonableness”. Further, despite what this paper says, structural change is not required to improve equity, the creation of networks is required, like those for neurofibromatosis type 2 in England

Implications for value improvement 

This project focused on a common problem, often overlooked – equity. Value based healthcare has to have a perspective that focuses on equity of resource allocation and coverage of all the people in need in the population, as well as on outcomes and costs. One of the new methods for increasing value is to develop population-based systems and this does not require ‘major structural changes’ which the authors identified as one of the principal reasons why change would not occur.

An excellent example of a system for a rare disease is the system that was developed for neurofibromatosis 2, in England. An excellent system specification was developed which bears no relationship at all to the structure, past or future. Key thinkers in system development, for example, Nonaka and Takeuchi describe how the system floats alongside the structure.

A business organisation should have a nonhierarchical, self-organizing structure working in tandem with its hierarchical formal structure… business organisations grow in scale and complexity they should simultaneously maximise both corporate level efficiency and local flexibility…the most appropriate name is the ‘hypertext’ organisation

Source: The Knowledge-Creating Company ‘How Japanese Companies Create the Dynamics of Innovation’ Ikujiro Nonaka and Hirotaka Takeuchi

As is often the case, a picture illustrates this principle clearly.