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Published January 24, 2023 | Version v1
Project deliverable Open

B1MG D6.7 Guiding principles and best practices examples for mirror groups

  • 1. ISCIII

Description

Mirror groups are a national reflection of the working groups set up by the 1+MG Initiative. Due to the differences among countries, both in terms of research and innovation and health systems governance and also based on their approaches to the 1+MG initiative, mirror groups are set up in different configurations. 

As a first action, we designed and circulated a survey in 2020 in order to map the configurations of the NMGs and have a first vision on how countries were establishing their NMG by taking the peculiarities of the different National Health Systems and governance into account. This mapping helped us to know how and to what extent NMGs connect with their national initiatives. This survey was complemented with bilateral meetings with some countries to gain a deeper knowledge about the structure and operation of NMGs in those countries and its implementation at the national level. 

Because of the important role of National Mirror Groups in preparing the country for implementation of 1+MG on the practical and political level, it is essential to monitor their status and performance to come up with recommendations and best practices to share among the set of NMGs. 

To this aim, the following actions have been carried out:

  • The development of an initial factsheet called ‘National Mirror Groups at a Glance’ to help countries clarify the mission, role, tasks and structure of NMGs in the initiative for the time being. 

  • Bilateral meetings have been held with some countries to gain knowledge about the structure and operation of NMGs in those countries and its implementation at the national level.

  • Two surveys have been circulated among the participating Member States and the Observer Countries of the initiative to analyse the evolution of the different existing mirror groups assessing its structure, composition, governance, and operating modes as well as whether they were correlated with their national structures. 

After analysing the results, it has been found that in most of the countries the WG1 representative is the main figure that coordinates the NMGs, that 47,37% of the countries consider that their NMGs are ‘Operational’, and that the majority of the countries consider that there is engagement between their NMGs and the initiative. It seems that the majority matched their configuration with “Small countries with National Genomics Strategy’ model” or “Countries starting to set up their NMGs’ model”. Two countries identified “Big countries with National Health Service System” as their current status. Besides, the composition of the NMGs is quite heterogeneous among countries. Regarding the representation of stakeholders, it should be noted that most of the countries have a high level of representation of the research and university communities and not so much neither from the clinical nor the IT/Data communities.

By comparing the results from the two surveys that have been circulated, between November, 2020 - February, 2022, we have noted some improvements in the number of operational NMGs, the establishment of the governance structure, the level of activity of the NMGs, the engagement between NMGs and the initiative, the definition of NMG composition, the number of members involved and the signature of some “Terms of references” by some countries. 

 

To achieve the goals regarding NMGs set up in the roadmap of the initiative, it would be recommendable that all NMGs have a higher level of engagement with the initiative and that they are better aligned with national initiatives and countries adding more stakeholders related with patient organisations, industry and clinical communities.

This data has enabled the setting up of some guiding principles and the identification of a set of best practices for the good set-up, running and coordination of mirror groups.

Files

202205 B1MG D6.7 - Guiding principles and best practices examples for mirror groups.pdf

Additional details

Funding

B1MG – Beyond 1M Genomes 951724
European Commission