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Translating Genomic Data into Patient Benefit – Sharing my Genome

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The Studio

Riverside West

Whitehall Road

Leeds

LS1 4AW

United Kingdom

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This autumn NHS E is taking forward the procurement of a national Genomic Laboratory Service covering rare disease and cancer. The response to this tender process will be a collaborative one (GeNEQ) involving the 5 key providers in the region (Sheffield Teaching Hospitals NHS FT, Sheffield Children’s NHS FT, Leeds Teaching Hospital Trust, Newcastle Upon Tyne Hospital FT and NewGene). This is in line with the information received from NHS E that a service lot consisting of Yorkshire, Humber and the North East would be acceptable.

It is already clear that data infrastructure will be key to the delivery of the GeNEQ service. It will require the genomic services provider organisations to share data both within the GeNEQ organisations and with NHSE at a level of detail that will be practically challenging to collect and manage, and potentially will allow patient identification.

This meeting will provide the foundations for addressing that challenge and will facilitate the formation and implementation of the required ongoing communication and decision structures including a Technical Design Authority or similar.

We will aim to:

1) Get agreement with the CIOs and CCIOs for the 5 organisations involved in GeNEQ as to how we can take forward data sharing both within the region, and with NHS E and the national infrastructure.

2) With IT and data leads from each organisation, explore possible system architecture, define and describe potential solutions and lay the foundations for the preparation of a business case.

3) Reach out to the clinical community and identify clinical champions to help form the vision for the future regarding collection and use of data, including genomic data, and how we maximise patient benefit through the delivery of personalised medicine.

4) Explore the role and requirements of the research community and GeCIPs regarding genomic data in driving forward improvements in healthcare.

PPI representatives from GeNEQ will be attending the event and contributing to the discussions across all workstreams to ensure that the patient context and views are woven into the development of all aspects of the data infrastructure.

The event will have national speakers to provide a context and a series of workshops and other processes will follow to deliver clear outcomes that GeNEQ can build on.

In addition, through the key participants, there will be engagement with the national processes and ongoing debates regarding the sharing of genomic data. This will position GeNEQ as an exemplar model of engagement and have the potential to influence and drive the national agenda regarding data sharing.

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Date and Time

Location

The Studio

Riverside West

Whitehall Road

Leeds

LS1 4AW

United Kingdom

View Map

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