Experts meet to progress HSE National Genetics and Genomics Strategy

 National Genetics and Genomics Strategy to be published by end of this year

Today, Friday, 30th September 2022, as part of the development of the National Strategy for Genetics and Genomics, the HSE hosted a Town Hall event at the Royal College of Physicians of Ireland, attended by Minister for Health, Stephen Donnelly TD.

Minister Donnelly said: "I welcome the opportunity to attend the National Genetics and Genomics Strategy Town Hall. Genomics has the potential to transform healthcare provision, allowing for a more cost-effective healthcare system that delivers better patient outcomes. As part of the Programme for Government we made a commitment to genomics and the €2.7million in funding that we have secured for the implementation of this Strategy is a testament to the work achieved to date. I look forward to the publication of this Strategy."

The development of the National Genetics and Genomics Strategy has been underway since May this year. An expert Steering Group chaired by Dr Mark Bale, former Genomics Advisor to the UK Department of Health, and including representatives from a range of clinical specialties in Ireland, academic and patient representatives, and international experts in the area of genetics and genomics is leading the development of the strategy. This work is a priority of HSE Chief Clinical Officer, Dr Colm Henry, and is led by the Strategic Programmes Office of the CCO.

The National Strategy, which will be published by the end of this year, will define what actions and resources are needed so that the HSE can develop a genomic service for Ireland that will improve health outcomes, drive down the cost of care, and fuel scientific innovation and discovery.

At today’s meeting, the Working Groups for the National Genetics and Genomics Strategy – in Data and Infrastructure; Workforce and Collaboration; Clinical Practice and Innovation; and Policy, Communications and Engagement – presented their proposed strategic priorities, which are the key components of the National Strategy document, for discussion and feedback. Such open dialogue was deemed by the HSE to be necessary in finalising the substantive content of the strategy document.

The work to date of this large collective has been critical in developing strategic priorities that can address challenges such as shortages of trained specialists, knowledge gaps in the workforce and general public, and lacking coordination between clinical and research genomics. The immediate goal of the National Strategy will be to provide a framework for the development of equitable patient- and family-centred services underpinned by the creation of a permanent national structure to provide governance and ensure the required guidelines and policies are in place. The strategy will define the priorities and actions required in the near term to support a focused model for Genetics and Genomics service for Ireland.

Dr Bale said “I am delighted to be asked to work with so many experts and HSE colleagues on this important National Strategy, and it is wonderful to have the support of Health Minister Stephen Donnelly at the Town Hall this morning. The motivation and speed with which the Working Groups have operated has been impressive, and the incorporation of patient voices has ensured that the strategic priorities identified are those most vital to patients and their families.”

“We are aiming to complete the initial work on the strategic direction this year, but the implementation of this strategy from 2023 onwards will continue to involve close working between all of the various partners, the HSE and the Department of Health.”

Thanking the attendees for their participation in the Town Hall, the Director of the HSE’s Strategic Programmes Office, Deirdre McNamara said, “Today marks a significant step in the development of the National Strategy. This meeting presents an open and transparent platform from which working group members can raise questions on all of the proposed strategic priorities, and we are delighted to have so many of the working group and steering group members in attendance today.”

Professor Eileen Treacy, Director of the Irish National Rare Diseases Office and Consultant at the National Centre for Inherited Metabolic Disorders-Adult Services, Mater Hospital, said of her time as a member of the Steering and Working Groups “It has been a privilege to work with so many esteemed colleagues, external stakeholders and patient representatives to progress Ireland’s first National Genetics and Genomics Strategy, with its patient-centered approach.  The support and enthusiasm surrounding this effort shows that this strategy is a welcome, much-needed and anticipated development.”

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Last updated on: 30 / 09 / 2022