NDRS Strategic Plan 2024 – 27

An introduction from our Deputy Director Sarah Stevens:

The breadth of our work spans all four domains of Data Saves Lives, and the move to NHS England brings us an opportunity to both increase the impact of our work and improve how we work to meet the needs of all our users.

The plan outlines our core business, values and the five strategic priorities we are focusing on for 2024–27. All are intrinsic to our vision ‘to drive improvements in population health and patient outcomes as a globally trusted curator of high-quality disease registration data and analysis, enabling and providing expert, timely insight and evidence’

Our strategic priorities focus on making our data more timely and, through working with the Data Access Request Service (DARS) making our data more accessible. Alongside, our focus is on better understanding health inequalities, ensuring we have the right infrastructure in place and accelerating further data linkage, continuing to collaborate and strengthening our partnerships and ensuring that innovation thrives. Finally, and most importantly, a focus on each and every member of our team, without whom none of this incredibly valuable work would be realised.

We would love to hear your thoughts and feedback on the plan. Please get in touch via [email protected]

Through a supported, planned, stable and responsive workforce, we will continue to ensure that we are a highly specialised workforce providing insight across the entire patient pathway. We will work to:

Stabilise our workforce and prioritise staff well-being by:

• involving our teams and stakeholders in prioritising workload
• enabling staff to access the right tools and technologies for their roles
• achieving and celebrating together
• committing and adhering to the Data and Analytics values and NDRS Team Charter

Invest in, and support training and development, by:

• assessing and identifying any skills gaps, and supporting staff to access training and development, to continually strengthen our core expertise and skills across all domains
• creating better knowledge sharing and collaboration across our teams

Provide inspiring leadership and transparency on decision making by:

• NDRS leadership commitment to delivery on the strategic plan
• listening to staff and stakeholders
• allocating resources across cancer, congenital anomalies, rare diseases and genomics to balance the needs of each area
• establishing clear and transparent governance arrangements, ensuring a standardised approach to decision making and communication

By focusing on the timeliness and accessibility of data, we aim to provide high quality data and analysis for use as actionable evidence to improve population health, service provision, patient outcomes and support research, and to make this available in appropriate formats to all.

We will work to:

Improve the timeliness and quality of our data by:

• adapting registration processes to improve timeliness for national cancer registration data to 12 months post diagnosis and national congenital anomaly registration data to 12 months post expected date of delivery (EDD)
• supporting providers to improve data submission quality for all disease areas
• developing and implementing a solution for easily accessing all COSD* data items

Improve the utility and coverage of our outputs by:

• continuing to respond to user needs through regular engagement with stakeholders, including patients, public and clinical community
• expanding the number of conditions included in our genomics and rare diseases outputs
• reporting our outputs by age, gender, ethnicity, deprivation, and geography, where relevant and possible, to understand potential inequalities

Improve access to NDRS data by:

• moving our outputs to the NDRS website, providing a single point of access to improve visibility and accessibility
• working with the NHS England Data Access and Partnerships Team to make more NDRS data assets available through the Data Access Request Service (DARS) and Secure Data Environment (SDE)

Through data linkage and the right technology, we will ensure that we have the right technical infrastructure and that we realise the opportunity of further data linkage together with greater integration across NDRS and the Data and Analytics sub-directorate within NHS England.

We will work to:

Maximise opportunity created by access to other NHSE held data by:

• using centrally held data sets to streamline registration
• re-engineering data pipelines for existing data feeds in the new NHSE environment
• establishing data linkage mechanisms in the new NHSE environment including linkage of genomic and treatment data

Improve visibility and efficiency by:

• creating a consolidated platform for data across NDRS
• modernising our analysis platform
• ensuring appropriate infrastructure for rare disease data management

Create secure tech and infrastructure by:

• migrating systems from legacy organisations to NHSE environments
• analysing business needs, engineer, deliver and secure innovative technologies to support and protect the collection, curation and value of national disease data
• leveraging central tech health opportunities NHSE has to offer, particularly monitoring and live services.

Through partnerships, cross-team working, and clinical engagement, we will continue to develop our successful partnership working to maximise use of the data and NDRS’ expertise to drive innovation and improve patient outcomes. We will seek partnerships that can support our strategic aims and those of wider NHS England.

We will work to:

Establish an enhanced partnership model by:

• standardising our approach to partnership management
• establishing an income-generation model to create appropriate capacity for partnership work
• exploring how we can benefit from using the NHSE Secure Data Environment for our collaborations

Seek partnerships to expand our work by:

• seeking out strategic needs-led partnerships
• seeking partnerships more equitably across cancer, congenital anomalies and rare diseases
• continuously focusing on the types of partnerships that are a priority for us
• strengthening and focusing NDRS’ participation and visibility across our stakeholders

Work in collaboration to make best use of the data by:

• continuing to benefit from input from clinical experts
• continuing to collaborate internationally on research and surveillance
• identifying efficiencies as part of the new NHS England to do things once and well

By focusing on greater automation, burden reduction, methodological innovation, we will champion and enable internal and collaborative innovation to drive improvements to data collection and quality to reduce burden on the frontline, ensuring value for money.

We will work to:

Drive methodological innovation by:

• ensuring ongoing mechanisms are in place to support and enable cross-team innovation
• identifying and using novel methods using international best practice where available
• ensuring continuous improvement of data quality and reporting, through agreeing and achieving national and international quality standards on collection, curation and outputs

Maximise opportunities for innovation in new, high-profile areas, such as genomics and rare disease, and apply learning across NDRS, by:

• building on the world-leading National Lynch Registry to create a National Inherited Cancer Predisposition Register to support digital transformation of patient pathways as well as high-quality research and innovation
• exploring the application of novel methodologies for timelier curation of genomic data, including pattern recognition and natural language processing
• expanding rare disease registration, including the development of algorithms for the identification of rare diseases in routine data sets

The below image provides an overview of the NDRS governance framework. Please refer to the text description below for a full summary of the content of this image:

If you would like a copy of the strategic plan please email [email protected]