Renal Genomics :: North West Kidney Network

The Genome UK implementation plan highlights the importance of delivery partners working together across healthcare systems to implement the Genome UK strategy. Pillar 1 specifically stresses the importance of incorporating “genomics into routine healthcare to improve the diagnosis, stratification, and treatment of disease” and references the UK Rare Diseases Framework. The integration of genomic technologies into NHS pathways will be key to realising the aspirations of the Genome UK strategy and the UK Rare Diseases Framework. Genome UK: 2022 to 2025 implementation plan for England - GOV.UK.

Genomic technologies have the potential to diagnose diseases early but can also raise anxiety for patients, their families and healthcare staff. As a result, it is essential that our pathways are designed with the patient at the centre with a focus on shared decision making. Patient and carer engagement is key to the successful integration of genomic tools into NHS pathways.

The NWKN has identified awareness of, and equitable access to, genomic testing as an area of significant need and was able to gain funding from the North West Genomics Medicine Service Alliance and Health Education England (HEE) to commence work on this project.

The national conversation on rare disease survey identified that patient groups and healthcare professionals shared the same concerns regarding genomic testing: coordination of care; getting the right diagnosis; awareness amongst healthcare professionals; access to specialist medical care and treatment. This was also reflected by our NW clinicians during our engagement events.

Specific barriers were identified by teams in the NW in relation to mainstreaming genomic testing in renal medicine including having sufficient time to consent for and request genomic tests and adequate knowledge to confidently interpret and discuss results. The limitations of this assessment were that it predominantly reflects the opinions of renal doctors and needs extending to include other healthcare professionals and patients. One area we aimed to address was to ensure education of all healthcare professional but also to gain ‘genomic champions’ within five regional centres.

Time has been identified as a barrier to further education and delivery of genomic testing. This programme of work undertook detailed learning needs assessment to enable us to create a workforce that is able to meet the needs of patients. We will also deliver co-designed pathways with tools and education material to support services within the NW.

The new agreed pathway utilised the use of a regional MDT based at one of the North West Genetic Specialist Centres. This ensures effective and efficient use of clinical time the NW, this optimum model has been created by the stakeholder group. The embedding of this process into NW practice has commenced. Sustaining this approach will be the focus for 2023-24. Efficacy and progress of this embedding process will be reviewed at agreed intervals, regeneration of the NWKN Genomics Dashboard will support this analysis process.

North West Renal Genomics Ideal Pathway

To co-produce a robust pathway for all NW kidney patients that will improve equitable access to genomic testing
To integrate and embed genomic testing into a renal pathway across the North-West area.

This project was designed to aid and promote renal genomic testing within the NW by:

Agreeing a NW genomics testing pathway
Reducing inequality of access to renal genetic testing
Raising awareness of renal genomics
Producing genomics educational material

Development of the NW renal genetic service that will embed the projects approved NW renal genomic pathway
Further development of a NW renal genomics MDT platform with the introduction of a robust referral system- Patient Pass
Effective across site and speciality MDT communication due to digital communication platform Patient Pass
Implementation of 12 months non recurrent funding allocated for a NW MDT Co-ordinator based at Liverpool University Teaching Hospital NHS Foundation Trust
Implementation of 12 months non recurrent funding allocated to 4 Band 7 Renal Genetic Practitioner hours. Four sites hosted these renal genetic nurse practitioners
Future planning for the continuation of the renal genomics service in the NW, Other centres within the region are wishing to replicate and implement the NW Renal Genomics Nurse Practitioner posts
Hosting a free renal genomics day for all renal services and genetic services within the NW
NWKN Website to host a range of educational resources, NW renal genomics pathway and links to other public renal genetic specific material will be added to the platform
Completion of two educational renal genetic testing videos targeted for adults and older children accessing renal genetic services; NWKN Vimeo link to video links to videos

Ensuring that the project continues as a NW approach, with the MDT core team and Renal Nurse Practitioners being located within multiple sites across the region.
Ensuring equity and collaborative working across the service specialities. This was addressed with a well-structured renal genomics service training, planning and implementation schedule.
Promoting a great awareness, understanding and engagement across the wider Nephrology and leadership team of the need, benefits and value of the new renal genomics service and NW MDT

This project was lucky to have a number of key patient stakeholders. The workstream and stakeholder group would like to recognise the input and gratitude to Tess Harris from the PKD Charity and Robert Finnigan the NWKN Patient Voice Manager with lived experience of PKD. Genomics plays a key role within the diagnosis of PKD and having Tess as part of this stakeholder group benefited the project's work and services built within the NW.

Continuation of the Renal Genomic services through business cases with clinical team
Continuation of the renal genomics process at provider level

Special thanks to Dr Emma McCann, Dr Helen Stuart, Professor Smeeta Sinha, Dr Kate Hillman, Dr Alice Marsden, Dr Joshua Storrar, Dr Simon Williams, Dr Matthew Howse, Dr Harish Shetty, Dr Lamis Taha, Dr Noshaba Naz, Andrew Clisham, Robert Finnigan, Dr Richard Holt, Dr Paul Warwicker, Leeanne Lockley, Dr Sharmila Bandyopadhyay, Elizabeth Alexdander, Dr Thomas Dowsett, Elizabeth Lamberton, Dr Beccy Cummings, Chris Herring, Jude Allen, Dr Amrit Kaur. Alastair Campbell CEO of Patient Pass and team for all their help and enabling the project to access Patient Pass as its digital referral and communication platform.

The Network would like to also thank the four Renal Genomics Nurses for their commitment and dedication to this project. As a result of their hard work and passion for embedding renal genomics into everyday Nephrology services, the region now has 4 successful nurse led renal genomics clinics, facilitating renal genomics testing and forming an essential part of the NW renal genomics MDT. Their vision is not only to continue this service but develop and grow the service, with a focus on improvements to the renal community's genomic pathway.