North West Genomic Medicine Service Alliance scales use of genomics tool to improve care for patients with rare diseases

In the dynamic landscape of genomic medicine, the GEN-O application has proven its ability in revolutionising patient care within the North West of England.

Originally developed by Manchester University NHS Foundation Trust (MFT), this groundbreaking application, known as GEN-O, is reshaping virtual care pathways, resulting in faster diagnosis, treatment, and collaborative multi-disciplinary efforts across clinical specialisms and geographic boundaries.

The platform seamlessly brings together a patient's genomic information, simplifying the process of ordering genetic testing, reviewing results, and helping discussions across diverse disciplines.

This comprehensive approach aims to provide the best possible care management and treatment for patients with rare diseases.

Key partnerships:

A collaborative effort, the project brings together MFT, the NHS North West Genomic Medicine Service Alliance (NW GMSA), the National Institute for Health and Care Research (NIHR) Manchester Biomedical Research Centre (BRC), and Answer Digital.

Answer Digital supports organisations to use technology to improve their operations and were appointed by the NW GMSA, to support the project.

Their work included undertaking feasibility studies as part of a discovery work with Salford Royal, part of the Northern Care Alliance NHS Foundation Trust, as well as Alder Hey NHS Foundation Trust, to understand how the technology could be scaled across these organisations, understanding the “pain points” experienced by clinicians, visualising them and then translating them into practical solutions.

Answer Digital implemented information governance processes across pilot sites, including a ‘review and approve’ cycle, in line with each Trust’s processes, ensuring that the roll out of GEN-O is clinically safe, compliant with data security standards and cause minimal disruption to patient care.

Status, trials, and outcomes to date:

Trials are currently underway at selected sites, building upon discovery work that found GEN-O's potential to streamline processes within neurological and paediatric pathways.

The ongoing trials aim to increase the accessibility of the tool to a wider range of professionals, enabling the project team to:

Scale the use of GEN-O to multiple NHS trusts, piloting the platform at Alder Hey NHS Foundation Trust, and Salford Royal, part of the Northern Care Alliance NHS Foundation Trust.

Expand the use of GEN-O to include neurology and paediatric pathways.

Translate clinical needs into tangible solutions, such as bringing cancer functionality into GEN-O.

Standardise data processes across the North West, enabling better treatment decisions.

Develop an Application Programming Interface (API).

Reduce time spent on admin by up to 70%, enabling faster decision making.

Upon completion of the trials, a comprehensive assessment of GEN-O will be conducted to better understand its potential impact on genomic testing, data sharing and multi-disciplinary, cross-specialty collaboration.

The project not only showcases technological innovation but also highlights the collaborative efforts of various stakeholders in advancing genomic medicine services, setting a precedent for enhanced patient care in the North West and beyond.

Paul Wye, Healthcare Delivery Principal, Answer Digital, said about the project: “By standardising the GEN-O tool and making it possible to scale its use, the potential to improve genomic medicine in North West England is huge. We are really proud to be a part of such important work with the NW GMSA, MFT, and the NIHR Manchester BRC, and look forward to seeing the project unfold and show other organisations across the NHS what is possible.”

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