Developing the Scottish Cancer Registry and Intelligence Service (SCRIS)

What we did

Understand the need for change

It was clear that a review of Scotland’s main cancer data repository, the Scottish Cancer Registry, was required.

IHDP commissioned an external review and consultation, to identify recommendations for improving registry content, efficiency, accuracy and capability for benchmarking with other countries.

It was widely acknowledged there were large data gaps which needed to be addressed. The review offered 24 recommendations in 5 key areas to inform the modernisation of the Scottish Cancer Registry to improve cancer intelligence:

  1. Data sources
  2. Cancer registration system
  3. Cancer data platform
  4. Data access and information governance
  5. Data outputs and reporting - health intelligence
  6. Organisational issues

IHDP engaged stakeholders at the outset to understand local, regional and national experiences of cancer data and analysis, learn about enablers and challenges to data utilisation, and requirements for a Scottish Cancer Intelligence Framework.

From the very beginning, IHDP recognised the importance of being outward-looking and able to tap into the knowledge and expertise of those delivering cancer services. We wanted to ensure that implementing the recommendations of the independent review of the Scottish Cancer Registry was informed by the views of the wider community (see below).

IHDP issued an open invitation to participate in consultation sessions in each of Scotland’s five cancer centres to better understand:

  • data collection, entry, linkage and accessibility, benchmarking
  • how cancer data is managed
  • IT infrastructure
  • staffing, workload and capacity
  • what intelligence is required from data
  • any information governance issues

IHDP took an open-minded approach to this intelligence gathering, recognising that a ‘ready-made’ solution would not necessarily be appropriate.

Initially, it was thought Scotland might develop a resource similar to Public Health England’s cancer registry (NCRAS). However during the sessions it quickly became apparent that something more tailored for Scotland was required. The ‘easy way’ is not always the best way.

In practical terms, it can be difficult to find all the ‘right people’, access contact details, and schedule sessions to suit all interested parties. IHDP took a pragmatic approach to balance gathering useful insight with keeping up momentum, by:
  • using known contacts to cascade invitations across cancer networks and areas of expertise
  • ensuring a representative - rather than comprehensive - mix of participants for each session
  • allowing enough lead-in time for participants to shape the agenda to showcase their work
  • ensuring ample time for discussion to generate insight

Scotland has three regional cancer networks. They are key elements in the governance of cancer services and pivotal in bringing together clinical and managerial leadership

  • WoSCAN: West of Scotland cancer network
  • SCAN: South of Scotland cancer network
  • NCA: North of Scotland Cancer Alliance

Collaborate with key delivery partners

Collaboration was grounded in on-going dialogue to understand needs and barriers to progress:
  • IHDP’s approach was ‘what can we do to help?’
  • A shared motivation to create a cancer registry service to meet the needs of users, to improve service delivery and health outcomes for patients, was a powerful driver.
  • IHDP and the SCRIS delivery team were closely engaged throughout all stages of scoping, planning, delivering and monitoring. Regular contact enabled the building of positive and collaborative relationships, which supported the development of mutual trust and respect at both strategic and operational levels.
  • IHDP was able to judiciously offer financial support and other resources, by ‘pump priming’ areas of work and funding specific roles (for example, a PHS programme manager). This helped to remove resource-related barriers to progress. Having dedicated staff enabled a focus on developing SCRIS at pace.

Create an ambitious blueprint

The recommendations of the independent review of the Registry, and user feedback, provided a structure for an ambitious proposal to create the Scottish Cancer Registry and Intelligence Service (SCRIS).

The proposal aligned with the Scottish Government’s Cancer Strategy, addressed the gaps identified by the review, and spoke to the needs raised during consultations with those delivering cancer services. This triangulation of policy, service and clinical requirements ensured the proposal was ‘fit for purpose’ and engaged all relevant stakeholders.

Development areas identified were:

  • Incorporate additional cancer data sources not currently available for national analysis (including enhanced chemotherapy, enhanced radiotherapy, cancer audit/QPI and molecular pathology).
  • Enhance the Scottish Cancer Registration System (SOCRATES) to process new data sources, thereby improving the coverage and accuracy of cancer registration data.
  • Feed the enhanced flow of cancer information into a national data repository, to enable linkage to a wide range of health and care datasets.
  • Provide a national information platform for accessing timely cancer data (making data available more quickly).
  • Develop cancer dashboards and accompanying analytical service to best exploit Scotland’s rich data for improving cancer services, including prevention and treatment (initially incorporating 10 datasets).
  • Provide enhanced Health Intelligence activities in support of service delivery, research and innovation.

An opportunity to explore the potential of primary care data to understand more of the whole cancer journey story was also recognised during SCRIS developments.

The SCRIS team is considering what data held in primary care could usefully be incorporated into SCRIS to enhance the overall picture of cancer care in Scotland. The SCRIS and IHDP teams are working with clinicians in general practice to make use of data available in practices through the SPIRE tool (developed by NSS). The group is starting with data related to cancer prevention, but as this work develops the ambition is to extend the scope to symptom recognition, to support early diagnosis of cancer.

The approach will help to establish a wider intelligence framework for Health and Social Care in Scotland.

SCRIS forms the backbone of the wider Scottish Cancer Intelligence Framework, is future-focused, and the development approach taken is extendable to other disease groups.

This future proofed solution allows linkage to existing data sets in PHS, and will incorporate other data sets as they become available, as well as taking on board emerging developments such as NLP (natural language processing), big data, and open data as they grow in importance.

Develop a user-led and iterative delivery programme

SCRIS was initially set up with development funding over two years to implement major developmental objectives around improved data processing, new data feeds, data dashboards and a more accessible “wrap around” analytical service, benefitting from expanded analytical capacity.

It was developed through extensive stakeholder engagement across health organisations, central government, the research community, third sector and patients. In relation to Information Governance (IG) best practice, input was sought from national IG advisory bodies, to shape the project’s direction and progress.

Developing SCRIS involved a range of components, and was underpinned by creation of a Cancer Intelligence Platform into which the range of national cancer data made available to SCRIS would be fed.

Creating SCRIS
Creating SCRIS

Creating SCRIS

IHDP’s Director was Chair of the SCRIS Executive Group leading on delivery.

This ‘external’ leadership role was conducive to galvanising action at pace and offering constructive challenge, being independent of any organisational-wide constraints or concerns. Regular and frequent meetings gave the project momentum, and as a funder, IHDP was able to drive progress and set timescales.

Spotlight on SRTDS

Scottish Radiotherapy Dataset (SRTDS) - enabling comparable radiotherapy data.

Agreeing the dataset

IHDP collaborated with Scottish Government, NHS Scotland and Public Health England (PHE) to agree a radiotherapy dataset suitable for use in Scotland and comparable to other UK nations.

Scottish Government entered an agreement with National Cancer Registration and Analysis Service (NCRAS) in Public Health England (PHE) to collect, quality assure and report the radiotherapy dataset (RTDS) on behalf of Scottish radiotherapy centres.

The RTDS is a data standard that requires all NHS Acute Trust providers of radiotherapy services in England to collect and submit standardised data monthly against a nationally defined dataset. Its purpose is to collect consistent and comparable data across all NHS providers of radiotherapy services, to provide intelligence for service planning, commissioning, clinical practice and research and the operational provision of radiotherapy services. Trusts upload and validate their data via an online portal, and receive timely operational reports.

Scottish Government sought to implement this solution in order to ensure regular and consistent collection of the RTDS, and enable meaningful benchmarking of radiotherapy services across the UK.

In collaboration with the Scottish Government Radiotherapy Sub-group, IHDP facilitated a project to transfer Scotland’s Radiotherapy Dataset to PHE. A project manager was appointed through Health Board secondment to work closely with Scottish Government, the radiotherapy centres in Scotland and the PHE Radiotherapy Dataset Project Lead to support the implementation of the RTDS.

Enabling a comparable dataset

The SCRIS team is working with Scottish radiotherapy centres, RTDS and PHE to build feeds of the Scottish data to PHE for benchmarking, and to then incorporate the data into the Cancer Intelligence Platform. This information will add to the breadth of Scottish national cancer data and allow detailed analysis of cancer treatment alongside, and linked to, other national datasets to understand more about cancer patient pathway and outcomes.

Key steps

Engage stakeholders at the outset and actively seek to tap into the knowledge and expertise of those delivering health services, and fully understand the need for change.

Be pragmatic and balance gathering useful insight with keeping up momentum. Aim for representative rather than comprehensive intelligence, and ensure ample discussion.

Maintain on-going dialogue to understand needs and how barriers to progress can be resolved.

Link policy, service and clinical requirements to ensure plans are fit for purpose across stakeholder groups.

Progress iteratively and in response to user feedback, flexing plans as required to ensure the vision for change is achieved.

Impact Stories

The ways in which IHDP’s approach and activities contributed to improved outcomes and impact are shown through impact stories.